Back to School 2014
5th Grade and 1st Grade, here we come!
Miss Manners Camp 2014
While big sister was away at Camp Tonawandah for three weeks, baby sister had fun at our local YMCA Miss Manners Camp for a week. Each day she looked forward to dressing up, dancing and learning how to be a proper lady.
On the last day of camp, Mary Clare asked to put her new skills to the test at Yogi Bear. Our lunch date was a smashing success. (Notice her pinky?)
Camp Tonawandah
McCanless headed to Hendersonville, NC for summer camp this year. Camp Tonawandah is where Aunt Liz attended camp and Mimi and Bapa spent several summers as counselors. Mel loves the area and has looked forward to the day we would send McCanless. (Three weeks is a long time for mommy, so I had to build myself up to it!!) McCanless didn’t know anyone at camp and was counting down the days. I am so very proud of her and thrilled that she loves overnight camp!
Pick Up Day!!
no.
This morning as I chatted with a few mommy friends in the halls of THA, I whipped out a video I just so happened to record yesterday afternoon. It was only fitting as we had been chatting about sassy mouths and ugly words.
Just before I recorded the video, I had taken the girls to the local book store to purchase a book. I made it clear before going into the store that we would each buy one book. We walked into Burry’s and immediately saw my sister, Kacy, also shopping. (Don’t you just love small towns.) MC ran to the back of the store to the children’s section, McCanless wandered to the youth area and I chatted with Kacy for a bit. What happened in the next 20 minutes could definitely go down as one of those “mommy moments” that you would love to erase from history (or least from memory.)
Screaming at the top of her lungs, “I HATE YOU!” “I WISH YOU WERE IN PRISON!” (Yeah, not sure where that came from…) “I WISH YOU WOULD DIE!” echoing throughout the store, all aimed at me. Mary Clare was letting me know exactly how she felt, simply for my refusal to buy her a doll hair brush.
I smiled, ignoring the mini tornado in front of me, and placed our books on the counter to make our purchases. What made it all worse was the fact that the two sweet ladies behind the counter were friends of ours. One, a neighbor and one, a family friend since I was a child. They both had that wide-eyed “deer in headlights” look about them as they watched Mary Clare.
We finally made it to the car, at which point I realized she had completely lost it-with no going back. So, I did what every 2014 mother does, I used my cell to video the whole debacle.
I’ll spare you the video, but I’m keeping that little jewel for when she’s older and her own daughter is driving her nuts.
Over the years, I’ve tried to blog about their awards, funny comments, sweet surprises and also those “not-so-great” moments. (I’m no perfect mother by any stretch of the imagination and I should probably blog about those moments more often to spare my girls future disasters in their own mothering days.) More importantly, however, I wish to provide them with a history of losses before accomplishments, of bad days leading up to good days. Those, I feel, are all moments that mold us.
As I watched my baby, my heart, scream, struggle to breathe and hate me in that moment, I wanted so badly to cave, to give her exactly what she wanted, to please her. I knew that her anger was temporary and that the lesson that she was learning was so much more important than making her happy in that very moment.
It dawned on me. Saying “no” now is easy in comparison. I know that as my girls get older, these times will only increase. I’ll watch them hurt, disappointed and make many mistakes.
Last night as she lay curled up around me in her little bed, I read the pink princess book that I actually purchased for her at Burry’s yesterday. She leaned in, kissed me and told me it was her favorite book ever.
I think I finally allowed myself to know that her disappointment was okay and not in vain. I hate allowing my babies to cry. I hate disappointing them.
I’m sure she’ll cry over much more than a doll hair brush and I know I’ll say, “no” again, and again and again. I’ll question my actions, she’ll hate me again, and I’ll accept her hugs at the end of the day. Always.
I hope she knows this now and forever.
Academic and Athletic Awards Ceremony 2014
4th grade Student Government Representative, Duke TIP, Class Leadership Award, All A’s, Perfect Attendance, Art Show Award, Published Author, Literary Meet Participant…Not too shabby, McCanless! We are so proud of you!!
Elementary Basketball Team and Cheerleading Participant
The Four Squares
So, I’ll admit, a class assignment has brought me to the blog tonight. (Thankfully, we are crazy busy living “normal” life these days.)
Mary Clare has a clothesline timeline to complete. With only four small squares to document and illustrate her life, I turned to the best (only) journal I have, babypennington.com.
You know me. I could write an entire book on all that she is and has achieved complete with dramatic-mom vision-details and lengthy anecdotes.
We have four little squares.
The assignment asks for four major milestones. A sentence to be written about each with her age at the top. Simple enough, I thought.
Until I actually thought.
Milestones. Wow, does she ever have them.
Everyday I struggle with wanting to scream at the top of my lungs, “She’s different, you know! She has accomplished more than most can or ever will in a lifetime!”
Sure, she’s having difficulty with reading, potty training and focus. She has fine motor “issues” and gross motor “issues” and still has her paci. Trust me, I’ve learned so much about patience with others who just don’t get it. I bite my tongue. I hold my opinions. I smile and know that I’m probably the only person who will ever get it. She’s my Mary Clare and like every other mother out there, I’ll go down defending and fighting for her til the bitter end.
She’s at an age where she’d rather not mention her surgeries. Maybe she’ll grow out of it, maybe not. Either way will be her way and I’ll respect that.
As we brainstormed her first square, I suggested she draw a picture of herself as a baby with her little half heart. She could write, “I was born on June 27, 2007 and had heart surgery at 5 days old.”
I promise, I try REALLY hard to keep out of projects and school work. I do.
What she did next is no surprise to me. She did as only Mary Clare will and told me to back off. It’s her project.
She would prefer to write about going to school with her cousin Reese. Receiving her Barbie Dream house, playing with neighborhood friends at the pool last summer and taking her crown to school for show and tell last week. Those are her 4 timeline ideas and that’s what we’ll go with.
My crafty mom heart just broke a tiny bit.
As she colorfully illustrated her lifeline, her way, I scrolled through the blog, my heart ached. She has been intubated, paralyzed, sedated, on heart lung bypass and that was at only one week old. She has endured surgeries, seizures, enough medication to make a grown man sleep and yet, she is held at the same standards at all other “normal” six-year-olds. And you know what? She does it.
I’d love to complete the 4 squares for her and plaster them on billboards.
1-I saw her beating, stitched, pieced-together heart in the flesh at 6 days old when her chest was kept open 24 hours for swelling.
2-I held her arms down while she screamed as three 1 inch tubes were pulled from her chest after each of her three open heart surgeries.
3-I held her blue body in my arms while she seized for the longest 10 minutes of my life.
4-I have watched her run and gasp for air as she struggled to keep up with her friends at 80% oxygen levels. (Try running around your house three times holding your breath. That’s what that feels like.)
But those are my squares. Those are milestones for me. Thankfully, she doesn’t remember any of those. So, as profound as those memories are for me, they do not define her. Ironically, they are more about me.
So, crowns, and friends, Barbies and Reese it is. I love my little Rock Star and all of her own little sassy, glittery milestones.
Go Hornets!
My heart secretly swells when I see my girls don a cheerleading uniform. I know, I know. I just can’t help it. Some of my fondest memories are cheerleading practices in summers with my best friends. No make-up, girls being girls, learning to be a team, learning to love each other and our sport. I’m hoping that whatever they decide to pursue, they learn as much about life and friendship as I did on my own team.
So proud of this chick! (I’ll admit, she wanted to quit her basketball team when she realized she was one of only two girls, but she stuck it out!) This was a step up. Away games versus other schools. Not like the usual basketball clinic days of her first, second and third grade year. Fourth grade plays with the big dogs. Fourth, fifth and sixth graders are combined to form the “Elementary Team” that plays other schools in our area. She started in most of the games. (Not really because she’s that good. Just because her coach is that good.) She gained so much confidence and experience and I feel sure next year, she’ll actually attempt a basket!
SNOW 2014
Lot’s of snuggle time when the power was out! (Everyone, including Bally, was cold and wanted to jump in Mommy and Daddy’s bed!)
Rosy cheeks!
“Snow Days” mean “Friend Days!”
How “lake kids” play in the snow! (Tubing behind golf carts!)
To pass the time…make-overs!
…and movies!
…and a little karaoke in swimsuits.
2013 Mayor’s Tree Lighting Ceremony
This little dancer laughed her way through, “We Need a Little Christmas” with her petite dance team. They were the youngest bunch but were, by far, the cutest!
Reese and MC after daddy counted down to light the Hartsville Christmas tree.
Winter 2013
McCanless made this on the back of a math sheet while doodling in class one day. I just adore her creativity.
…and speaking of creativity, I was one proud mama when I walked down the hall one afternoon and realized that two out of the ten THA State Art Show entries were created by my babies.
Mary Clare is proving to be quite the little artist, just like her big sister.
Thanksgiving 2013
At 11:00 am on Tuesday, I received a call from Mel. It was smack-dab in the in the middle of the THA Annual Grandparent’s Day program. “Delta called and said they were worried about the weather for our flight out tomorrow morning. We need to fly out today at 3:00.”
Don’t you love the south in the winter? I think the forecast for the following day was 40 degrees.
Of course, I hadn’t packed. I spent the night before making 8 dozen cookies for the grandparent’s day program, and the day before that, cooking for the Woodham Thanksgiving dinner, and the day before that….
I’m a procrastinator anyway. I work best under pressure.
I left the girls with grandparents and headed home, not bothering to tell the office I was leaving a bit early. I threw clothes in bags, all the while singing “Run, Run Rudolph” (just like in the movie, Home Alone). I grabbed the girls, picked up Mel and we hit the road.
We were headed to catch a plane to Florida so we could catch a boat to the Bahamas for Thanksgiving!
First sighting of the massive Disney Dream!
While the boat was still docked in Florida, MC stripped down to her bikini and dove into the pool! (There was a chilly breeze, but she had to swim!)
Our state room, with a fabulous balcony!
…and dressing table, to get ready for those fancy dinners. 😉
On the top deck (on Goofy’s put-put course) overlooking Atlantis in the Bahamas. (It was warm, but the skies were dark.)
Nothing that an endless supply of Mickey Ice Cream can’t fix!
Castaway Cay
Daddy and the girls writing post cards from Castaway Cay.
Woodturkey Throwdown 2013
We made it official. Challenge accepted.
The Woodham Thanksgiving Cooking Match
Mary Clare decided to enter a massive pot of Pioneer Woman Mac & Cheese. McCanless made a Buttermilk Pie, which tied for second place. I made the best-ever asparagus appetizer, which was gobbled up before anyone knew what was even going on. (That’s the sole reason I’m accepting defeat. They were so scrumptious, they were gone before anyone remembers eating them.) Mel planned to enter a Ruth’s cheeseburger, but was on-call and worked all day. We missed him, but had a great time! Congratulations, Kacy, your sweet potato praline casserole won the trophy THIS year! You better watch your back next year! Girl’s Team will own that trophy.
Always a party in Ashland, sequins and everything!
My heart
After a 24 hour Holter monitor test, we discovered that…
this girl, who has my heart,
has a perfectly imperfect heart
that is rockin’!
Spiders and Pumpkins and Fairs, Oh My!
Mary Clare’s take on spiders…
State Fair Fun
After the Haunted House ride with Aunt Kate
The faster, the higher, the better for my tiny thrill seeker!
Neighborhood Pumpkin Painting Party
Prestwood Annual Weenie Roast
Happy Birthday PaPa!
Annual K spider web in the cafeteria. Apparently, little MC has quite an arm.
McBee Fall Festival
Twin BFFs
THA Halloween Carnival
My Sea Fairy was a Cake Walk Queen!
MC and Kate at school
MC was a princess-beauty-queen at school on Halloween.
We finally carved our pumpkin on Halloween day.
…then she was a sea fairy-princess-beauty queen for Trick-or-Treating. (McCanless decided to be Sabrina, the teenage witch.)
Trick-or-Treat
Hello Fall!
First Day of 5K and 4th Grade at THA!
5K friends
New glasses for the new year!
Cooler evenings out in the country at Nonnie’s house, roasting marchmallows and hot dogs.
My smart Duke Tipper! We were so proud to receive a letter that McCanless qualified for Duke Tip Program.
Hello Dance Season!
Happy Birthday, Leah!
School Days
Great check-ups at MUSC!
Red Fox games
Canned food drive at school (5K won!)
Hippopotamus Sandwich
Breakfast at Carolina Lunch
Laughs with Friends
Hiatus
Dead Girls Team,
Mom has been away from the blog because dad didn’t update it and fix it — Dad is fixing it.
Dad will be updating it very soon. Mom is going to get back to writing her blog that she has kept diligently for nine years.
Thanks to everyone for your patience and for being great readers!
Mel
Camp Gwynn Valley 2013
McCanless went to Gwynn Valley in Brevard, NC this year for two weeks. All summer long, she counted down the days until camp.
Little sister begged to stay.
She came home singing camp songs (over and over and over and over) and talking non-stop of all of her new friends and rock climbing, candle making, and camp outs. I’m so proud of her! Two weeks was a breeze for her, but this mama was sad without her for so long.
We’ve pool’ed it, beach’ed it, theater camp’ed it. Mel and I went to Utah. McCanless went to camp. MC took swimming lessons and we had a fantastic, and busy summer.
The girls have one last summer trip with Mimi to Hilton Head Island this week, then it’s back to the grind with school, dance and tumbling and homework.
5K and 4th grade and Library, here we come! (Did I mention I’m heading back into the classroom this year?) Actually, I’ll be in the library, so we’re all heading back to school! Ready or not, here we come!
Life in the fast lane…
Well, I did it. I let a month go by with no blog post. For nine years that hasn’t happened. January 2004-June 2013 Oh well, there’s a first for everything, right? I’d like to blame my lack of blogging to the simple fact that our little family of four is simply busy living life. No big heart surgeries, no cancer fighting, no big mayoral election. Life by the pool, by the beach, with friends, art, church, neighbors, family, travel and a few doctor appointments thrown in there for good measure. (It is our family I’m talking about.)
Life is busy.
Life is good.
Mother’s Day Weekend
2013
2013 Mother’s Day Program at school with my little elephant!
2012
2012 THA Mother’s Day Program-It was one year ago on the day of the Mother’s Day program that I finished all cancer treatments. Immediately after the program, Mel, the girls and I drove to Columbia for my final radiation treatment. He dropped me off at the door of SCOA and 15 minutes later, I walked out alone, completely finished with my journey. It was wonderful. It was an uneventful and most amazing feeling. The funny thing is, I didn’t even realize it was my “One Year Cancer Free” date until several days later. I’m way too busy in this year!
Portrait of Mommy by Mary Clare
After school we hit the road and headed to the beach with Nonnie, Kacy and Sullivan for the weekend.
Happy Mother’s Day!
We continue to daydream of Disney days…
I’ve been downloading the hundreds of photos I took, the hundreds that Disney took and the hundreds of cell photos Mel took. What an amazing experience!
Easter 2013
Nonnie and the girls created a Easter garden this year. It turned out beautifully and I’m certain it will be an annual event.
Especially since this big guy will surely love to dig in the dirt next year!
The girls team did lots of baking…
And the Easter bunny brought us all of our Summer essentials!
McCanless and three other boys sang a beautiful little song in church on Easter Sunday. It was such a sweet little song, and I was so very proud of her. 
A fun Easter lunch at BB and Papa’s house
And a super loud, crazy, egg-hunt and dinner at Nonnie and Bubba’s house.
And lots of outside time, despite the chilly and wet weather.
The golf cart is out and ready for summer! (and has a brand new driver!) We’ve only had one call from an elderly (and quite concerned) neighborhood lady so far. Not bad.
A few days at the beach…
This girl is a mermaid in disguise, I do believe. She was thrilled to be at the beach. Pure bliss.
Just a taste of wonderful, lazy summer days ahead. We are so excited! Happy Easter!
So, there seems to be a trend here.
Mel started this blog over nine years ago, when this whole “mom blogging” thing was new. I quickly took over the reins and haven’t looked back. Well, except for the times I do just that, look back. There are many months with numerous posts of mommy tales, girls team stories and loads of photos. There are months of strictly heart-felt, pouring-my-soul-out, sappy posts.
My blog visitor rates are quite interesting. They vary from 3,000+ individual visitors a day to one (hi, mom). It’s typically in those “tough for me” months that the blog sees more visitors. Those times that extra encouragement was such a blessing to me.
I certainly love looking back over the years and remembering moments. I hope my girls do, too. I’ve not let a single month go by without at least one post. Some months, like March 2013 are (ahem) skinny, I’ll admit, but its usually those months that things are rolling along rather smoothly.
The trend is simple. Less posts mean “normal” chaos, as opposed to “dramatic” chaos.
So, without further adieu, may I give a brief update of our little family, in the event that someone still reads my blog, other than my mother.
As I sit and type, McCanless is draped across the chair to my left with her Dr. Dre Beats (fancy headphones) and her Ipad. (She hates to be alone and will do whatever it takes to be amidst others.) She’s in her skinny jeans, one sock, one bare foot and a turquoise and neon t-shirt. She’s certainly grown into a little (pre-middle school) lady, especially after countless of mornings arguing over what shirt wasn’t too tight or too loose, what pants were perfect and seamless. All of those mornings I begged her to just wear whatever would make her happy. (I still say the same to her every morning-and some mornings are more pleasant than others-but typically, she gets it together rather well and doesn’t look like a ragamuffin (too often). Whew. Only took nine years.)
She’s quite sincere, extremely thoughtful and sensitive. She’s a touchy-feely-needs-lots-of-hugs kind of person, much like her daddy and can play basketball like nobody’s business. (From her mother’s perspective, of course.)
She’s an extremely talented writer.
Mom always told me that I was born 30. I think McCanless was too. Most days, she has wisdom well beyond her years. She would rather die than upset a teacher (not the case in her attitude toward me) and continues to make all A’s. She’s easy when it comes to knowing that she’ll get things done for school, but leaves a trail behind her at home. I’m constantly asking her to close the fridge door, flush the toilet, pick up the four pairs of her shoes in the den, find her book bag, find her book. I imagine that will only get worse.
She adores her little sister, but forgets sometimes that she’s much bigger than Mary Clare. They don’t argue often, but when McCanless has had enough tormenting and taunting from baby sister, I typically have to step in and separate them. McCanless has no idea how strong she is and Mary Clare wouldn’t back down if her life depended on it.
These days McCanless, or “Cannie” as most everyone at school calls her, is spending more time in the bathroom every morning, spraying her glittery-smelly spray all over herself and brushing her hair. I asked her last night who her first kiss would be and without hesitation, she said Grayson Moyd, when she’s 16, and she promises to tell me when it happens. (wink)
Mary Clare keeps me laughing every day with her quick wit and amazing sense of humor. She definitely gets that from her daddy. She’s fiercely independent and quite a handful at school. She’s pretty “easy” for me and maybe that’s because she’s my second child; maybe I’m more patient with her; maybe its’ because she’s my baby; maybe I just “get” her. Who knows?
She’s the child I have to remind to walk. “Open the car door, Mary Clare, get out, Mary Clare, come on, walk with us, Mary Clare, hold my hand, Mary Clare.” Her head is usually in the clouds and I’m certain it’s not that she’s intentionally ignoring the world around her, it’s just that she’s so engrossed in her own world of thoughts, she has little time for the real world. She sees what most don’t allow themselves to see. Her imagination and creativity are simply amazing.
She loves to play alone in her room with her dolls and Barbies and would do so for hours. She is still obsessed with all things pink and princess and girly and glittery and laughs so often. She gets in silly moods and will laugh until she drops from exhaustion.
She has mad puzzle skills.
She adores our neighbor friends, the Nutts, especially their two daughters, Kaiti and Ann Frances. We often check the Nutts house first if we can’t find her. No matter how often we threaten, if she’s determined to go for a visit she does it. That’s the thing about my little MC. She’s a determined little person. No one can stop her and I love that little spunk. (As much as that same little spark infuriates me sometimes, I’m so glad it’s a part of who she is.)
I still can’t believe Mel and I have a nine-year-old and a five-year-old. On May 19th, we will have been married for 12 years and life couldn’t be sweeter. Our house still isn’t quite back to normal after our fall renovations and we have much to work on in the yard. It seems lately; however, it doesn’t bother me as much as it once did-these unfinished, and insignificant projects.
He is planning his re-election kick-off soon and I’m counting down the days until Summer Break! (Our golf cart is in the shop getting spruced up for a busy summer.) We are looking forward to sunshine, beach days, lazy summer mornings
and quite possibly time for more frequent mommy-blogging.
Heart Day so far…
We’ve already had an eventful Valentine’s Day and it’s not even lunch!
This morning the girls dressed up for the THA Annual School-Wide Valentine’s Day dance. It’s so cute! All students, grades 3K-8th grade, look forward to this day for weeks. The girls and boys doll-up and have a ball dancing with each other and their teachers. Mary Clare insisted on wearing “high-heels,” so we searched until we found them! Who knew baby-heels could be found?
Last night, Mel surprised me us with a Sonos wireless music system for our house! I woke up this morning to 50 Cent serenading me with “P.I.M.P.” (Don’t ask me why Mel has that in his iTunes.) So, as I frantically got two girls ready for a somewhat formal event (curling hair, teaching how to walk in heels, figuring out how to keep them WARM), Mel blasted everything from Taylor Swift’s, “Love Story” to the Go Go’s, “Vacation” to Phish’s, “Bouncing Around the Room.”
Spring Fever
Oh, Summer, where are you? This Spring-like weather lately is giving us spring/summer fever, big time!
Make-A-Wish South Carolina
Yesterday, Mary Clare was a Princess-for-a-Day, and while that may be the case most days, this was a extra special day for us, too.
Each year, the Student Council of West Florence High School raises money for Make-A-Wish Foundation of SC. They set a goal and ask Make-A-Wish to provide a “poster child” to help students connect to the organization on a more personal level. Mary Clare was just the Princess they needed this year.
As we entered the tall foyer of the school, we immediately saw a display fit for a Pinkalicious Princess and knew it was for our own MC. Her picture was displayed on walls and pink balloons were everywhere. We were immediately greeted by bubbly high school girls “oohing” and “ahhing” over Mary Clare, who didn’t skip a beat. Mel and I could have left the building at that point.
After a student-led ceremony, she accepted a check on behalf of Make-A-Wish Foundation for $5,500 from the students at West Florence and a matching check from Trusted Choice of South Carolina. $11,000 for Make-A-Wish South Carolina will bring so much happiness to many deserving children. We were honored to be asked to be a part of it all.
Of course, Mary Clare loved the attention from all of the pretty girls and silly high school boys. I honestly believe she’s never had so many cell phone photos taken of her. (And we all know how photographed she is!)
We were certainly honored and humbled to have been asked to accept the generous donations on behalf of such an amazing organization. We know first hand what an impact Make-A-Wish makes in the lives of children and their families.
Tomorrow is National Wear Red Day honoring those with CHD
And we are wearing red for these two sweethearts!
N-I-N-E
McCanless knows my obsession with parties and planning, and apparently I’ve rubbed off on her. My girls have quite strong personalities and I take what they want to do and run with it…as long as they like it. This skating party, however, was completely McCanless’s idea. We got busy over break tie-dying and tying tulle for tutus. This week, she marched herself right into our local bakery and drew a diagram of the two-tiered box cake with a hot pink bow on top and pink and purple and lime green polka dots. She created a menu of hot dogs with chili, chips and grape skewers. I’m so proud of my 9-year-old little party-planner.
Everyone had so much fun! Adults and kids…and no broken bones! (Although, I’m sure a few of the, ahem, older guests feel like they have broken bones today!) It was a magical night for my sweet McCanless. She kept saying her party was the best party ever!
Happy 2013
“Look Mom, I’m gonna work at the Japanese restaurant.”
After Mary Clare tried her hand at a little Japanese utensil toss, she and I made cake balls. Pink cake and pink icing, of course. We did coat them in white chocolate with silver sprinkles to give them a New Year’s feel. (You can’t always have pink everything.)
You’ll find no Germ-X in this house. And yes, we lick spoons and bowls.
After a good bowl-licking, MC decided to get all dressed up for a New Year’s celebration.
We ventured to Bow Thai Kitchen downtown and the four of us had a nice not-so-quiet dinner out. Nothing like ringing in the new year with three of my favorite people in the world. We were all in the bed by 11:00; however, I was awakened by a loudly shouted countdown-to-midnight by McCanless. She was in the den alone but I could hear the NYC Times Square crowd shouting with her. She came running into my bedroom, glared down at me and shouted, “HAPPY NEW YEAR!!! Mom, the ball dropped and I’ve been dancing and I counted down and I just watched Taylor Swift and it’s 2013 and …….” she goes on and on until I drifted back to sleep.
My how times have changed.
Cheers to an exciting 2013!
My prayer for the new year
After such a reflective season’s passing, and many days spent with family, I know I’ve thanked God numerous times for our many blessings of family, health and prosperity. I’ll admit, however, most of those prayers have been spoken hundreds, if not thousands of times. Repeated. Rehearsed. Routine.
Those moments that throw me back into times of complete despair are when I utter my most heart-felt words to my precious Christ. I’m not proud of that-the fact that it takes such magnitude for my prayers to be real, raw and honest. I think my new year’s resolution will be to pray with the fervent heart of my most trying times.
Tonight, Mary Clare and I were watching a movie on her iPad. It was plugged into the kitchen wall, charging and I suggested we move to her bedroom. She grabbed the iPad. I grabbed the cord. As we slowly walked into her room, she said, “Mom, this is just like when I was in the hospital and you carried my boxes. Remember?”
A suffocating memory crept into my chest.
I have no idea how much she remembers from her surgeries. When I ask her, she always mentions her “cast,” which was a wrap of tape on her arm covering her IV. I’m almost happy that of the months in the hospital and many procedures she has endured, a small IV is what she remembers most. Sometimes she’ll remember the Atrium and specific toys with which she played. Tonight she remembered being connected to her chest drainage “boxes.”
After her third open heart surgery, she had three tubes sutured into her chest which left their marks. Other than the tell-tale zipper down her chest, these are the most prominent scars on her tiny body, two quarter sized scars where the tubes once captured fluid that drained from her chest. The tubes were connected to collection chambers. These two “boxes” were beside her bed, followed us to the Atrium, were with her day and night for weeks. She has never spoken of them until tonight.
There are two memories, specifically, that bring about insurmountable pain, probably two of my darkest hours. During these moments, I cried out with every ounce of my being. I prayed with all that I am.
One of those memories was when Mary Clare’s drain tubes were being removed. Hearing her screams brought a feeling of complete and utter helplessness, fear and anger. I couldn’t take away the immense physical pain she endured. It was necessary. I begged God to give me the pain. I prayed that she would remember nothing of it. I prayed that she not hate me for allowing it to happen. And honestly, I prayed for God to forgive me for hating him at that moment.
I was earnestly praying.
Another one of those memories was on the night of Mary Clare’s birth, June 27, 2007.
Mel was on a work conference call away from the hospital. I walked from the maternity ward to PCIUC, where my sweet newborn was sleeping. A few hours passed. I relished in my time with her, breathing in her sweet breath, noticing every little wrinkle and admiring her tiny pink bow that Joy, her kind nurse, placed in her hair. Just before I kissed her goodnight and headed back to my room, I heard an alarm sound. Immediately, I was alone, crouched in the hallway outside of the PCICU doors. She coded and I had no idea if I would see my baby girl alive again.
I was so angry, sad, and confused, but I prayed. I don’t even remember how long I was in the hallway. I know I wept and kept repeating, “Your Will be done. Your Will be done.” It was a time that I prayed for nothing and everything at once. I didn’t see her awake until after her surgery 5 days later. I was helpless, scared and angry.
I earnestly prayed.
As life goes on and time heals, I find myself recalling those memories less and less. Memories that have changed me, that define me, that shake me up. I’m not sure how much Mary Clare will remember of her young life and honestly, I hope that as she grows she’ll not remember, only read about them here. But those are two moments of many that I can pinpoint relying entirely on God to breathe, to move, to make it one step further; moments that I poured my soul into his.
Moments that I am thankful for.
Thank you, God, for bringing me to my knees tonight and for reminding me to pray fervently without hesitation. Always.
Mary Clare blowing bubbles
Yep, we’re alive…
We’ve survived returning from an 8-day trip to Disney, moving back into our house, Nutcracker rehearsals and a four performance weekend-all within a week. Needless to say, I’m a bit busy and the blog is taking a back seat to everything, as is the Christmas tree, laundry and spelling. We’re slowly getting things back in order with the house. (You realize Mel and I have never moved, so this is all new. Having boxes and frames all piled in our dining room is driving me nuts.)
But,
we are in our newly renovated 1930’s creek cottage. I knew it would be a difficult process when we began telling others that we were renovating. They would all look at me wide-eyed and with a look of complete despair, as if they wouldn’t wish it on anyone. The process wasn’t difficult for us. It’s the ‘moving back in and getting everything put away and FINISHED’ part that’s killing me. We still have a long way to go.
But,
we are in. And as soon as I don’t have to leap over boxes to get through the dining room, I’ll get around to posting our amazing Disney pictures!
Updates…
The Hair: My hair is still growing. It’s still wavy and still dark. (I’m growing used to the fact that I’m officially, the “odd girl out” in my family. I’m okay with that. I match “Bubba,” my dad.)
The House: We are wearing out our welcome still at Mimi and Bapa’s house. If Mel tells me one more time that we’ll be in our house in a week, I think I’ll scream.
The limestone for the girls bathroom floor will be in a herringbone pattern.
We decided on walnut hardwood floors. (This photo is before staining/finishing.) This is our bedroom looking into our bathroom.
These two are just a little excited about their new PINK room!
2012 THA Halloween Carnival
McCanless’s winning poster design!
Madame Fortune Teller explained to Mary Clare that she would either live in Boston or Columbia, SC.
13.1
On Monday, October 24, 2011, I traveled to Columbia with three girl friends to my third chemotherapy treatment.
On Sunday, October 21st, 2012 I ran my first half-marathon with one of those girls. A girl I’ve known since third grade.
I did it because Lee dared me to do it and was crazy enough to think that we could.
I did it to prove to my girls that cancer does not define someone. It isn’t a sign of weakness.
I did it because I knew I could.
I was #1,608 of 2,251 runners. No too shabby for 10 months post chemo!
Reminders
Yesterday, as I unbuckled Mary Clare from her car seat, I brushed her blonde hair aside to straighten the shoulder straps. As she leaned to help me, I noticed them. She was positioned just right and the sun hit her face and neck so that I could see the tiny marks on her neck, invisible to most. Only I would notice. Only I would know what they are.
Her tiny body has been through so much and thankfully she doesn’t remember most of it. What is left behind are the scars of her fight.
The tiny scars on her neck are from central IV lines. She has various marks and scars all over her body from years of hospital admittances and three open-heart surgeries. Her claim to fame and tell-tale “zipper” are quite obvious and she has no qualms about her little half-heart. She will tell just about anyone who will listen that she does, in fact, have a broken heart. She’s quite proud.
Everyday life gets in the way, and I often forget about my little girl’s fragile heart. I watch her play soccer and take gymnastics. I fuss with her about leaving her Barbie clothes all over the place. She rolls her eyes at me, trying to be like her big sister, and she has tantrums. She sneaks into our bed at night after McCanless has fallen asleep. She never leaves her braids or ponytails in her hair and would eat candy for breakfast, lunch and dinner if I allowed it.
Five and half years ago, I dreamed of this.
I could only pray for one milestone for her. Birth. I asked God to please allow me to see her face once.
It seemed too much to ask for her survival, for her to even thrive. I prayed over and over, “Your Will be done. Your Will be done.”
It is what got me through every moment. Every day.
Tonight, I sent an email to a new “heart mom.” A friend of a friend, and Hartsville family, too. I was thrown back into all of those emotions and memories of what seems like forever ago. She will have her first child in January, a baby boy with HLHS.
It is a journey that will take every ounce of courage and strength you have, but it will also teach you more about God and life than you can ever imagine. Thank you, Jennifer, for allowing me to share Mary Clare with you and for another little reminder to thank God for everything that she has given us.
Sparkle
McCanless asked once again, like she does every other week or so, expecting the same answer.
“So, Clare Bear, want to get your ears pierced?”
We were on our way home from a beach weekend with just Daddy and the Girls Team. I guess with time in the car, McCanless ponders those important things in life that 8-year-olds think about. When exactly would Mary Clare say yes? Typically, MC presses her lips in a fine line, crosses her arms and refuses to even talk about it, answering, “NEVER!”
That’s why I’m still in shock about this.
“Mom allowed me to get my ears pierced when I was five.” “You should so get your ears pierced.” “We can share earrings and get lots of big sparkly earrings!” (I think McCanless was six, but either way, I didn’t want to do it then either.) Obviously, I have two girls who adore all things sparkly. I can handle glitter hair, costumes, sequin jewelry even. I do, however, draw the line at “long” earrings, or “hang down” earrings, as my girls say. This natural obsession is rather ironic because I can honestly count on one hand how many pairs of earrings I own, and honestly, six out of seven days, I have on my standard pearls.
Big daddy pulled into the closest Belk he could find and when I asked him what in the world he was doing, he replied, “Don’t you go to the make-up counter to get this done?”
“Get what done?”
“Didn’t you hear her? She said, yes. MC wants earrings. I’m taking her now.”
An hour and a half later, much closer to home and after plenty of time to back-down, we drove up to the Florence Mall. Claire’s Boutique was the only place I knew of that would do this on a Sunday, and after I asked no less than 300 times if she was sure and explained the process at length (needles, pain, maybe blood, the whole nine yards), she was more determined than ever to actually go through with it. I even told Mel we should probably wait and ask her doctors. He looked at me as if I had completely lost my mind.
My Mary Clare wanted real earrings and it would happen whether I was ready for it or not.
She climbed up into the tall stool and chose the sparkliest diamond earrings she could find on the “Beginning Stud” display. McCanless was beside herself, excited. (I silently told the young girl to down size them. I tried to convince her to get the teeny, tiny gold balls, to no avail. Bling it was.)
She smiled and watched wide-eyed, as two young girls pierced her ears. I held my breath waiting for the tears. Honestly, I just knew she was going to be furious with us once she felt it.
Just like that. It was over.
She never hesitated. Never frowned. Nothing. She jumped up and ran to the mirror to see, then happily chose two dozen cheesy multi-colored cupcake studs for her jewelry box.
I was in disbelief. She was such a big girl and didn’t shed one single tear. I, on the other hand, was an emotion wreck and a blubbering mess. Not sure if it was the realization that my sweet baby is getting to be such a big girl, or something else.
This girl, who has been through so much,
this baby, who continues to defy odds, and who teaches me so much, simply takes my breath away.
The big milestones, the everyday milestones, even sparkly diamond studded ones, remind me to thank God for each and every single moment.
Here goes nothin’
So, they say when you put it out there, you’re held accountable.
I realize I typically don’t post all that Mama and Daddy are up to (i.e. social events, moms-only weekends, nights-out sans girls team-we do have a life outside of you two girls, I just don’t share it on your blog-I’m sure you’ll be scouring my Facebook page in the near future anyway and will see for yourself.) I do, however, post those big ticket items like Dad becoming mayor, Mommy’s cancer, etc. in hopes that you will learn and grow from our experiences. There are also those few little events I like to post for posterity, just because. One day, I’d like to think that my girls just might be interested in what their parents did, outside of child rearing, of course.
This isn’t really a big ticket item for some, but for me, it’s huge.
I plan will run a half-marathon in October.
There, I said it. Now, I have to do it.
Remember back in June, I ran a 5K with one of my oldest and dearest friends, Lee? Prior to that, on January 13th, 2012 I decided to use a Couch-to-5K program to get chemo drugs out of my body and get myself back into shape. I finished my last treatment on December 28, I had a lumpectomy in January, radiation in February and March and started the Couch to 5K in April. I was able to run the entire June 2012 Hartsville Lickety Split 5K, without stopping. I finished in 31 minutes, but I did it. I had a huge smile crossing the finish line and tears running down my face.
Lee had never run a 5K, and only did it after I guilted her into it I think! (I pulled the cancer card on that one.) I’m so glad I did, because now, she’s a running feen. She’s now convincing me that I can actually run a half-marathon with her. (Rather, she’s crazy enough to think that we can pull this off.)
We are both on week 8 of a 13 week half-marathon training program. The cool thing about that is that it’s a “13.1 for PINK” app, with a portion of the cost donated to breast cancer research. (Don’t you love iPhones?) It’s a run/walk interval running program. We are both at the stage where we are consistently running 4:1s (that’s interval talk for run four minutes and walk one). Yesterday, I ran 6 miles.
Yeah, that’s crazy to say too. I could have never imagined myself being able to do that a few years ago.
Tomorrow is a long run for me and I hope to run 10 miles.
And that’s even more insane to think about. I think once I run the 10 miler, I’ll finally register for the half marathon. Or pass out, which ever comes first. I’m still a bit skeptical, and Lee has to constantly remind me of how far we’ve come, but deep inside, I know I can do it.
Know how?
As I run, I listen to the constant in and out of my deep breaths. I think about how my baby girl has struggled for 5 years, simply to breathe. She’s laughed, danced, and played hard for as long as she has been alive, and never once complained. Her cardiologist once told me to hold my breath and run around my house. That’s what it has been like for her for five years. So, as I run, I think of how easy it is for me and how hard it has been for her. I should never complain.
If she can do it, I can do it.
So there. It’s out there. I will run that half-marathon if it kills me.
It’s the least I can do.
Besides, what’s a little half-marathon when you’ve already taken down cancer? (wink)
It’s how we roll
A conversation between my hubby and me last Friday night went something like this:
Mel: So, did I tell you the builder starts on Monday?
Me: The builder you met with today? As in today is Friday and we pack the entire house up and move out somewhere by Sunday?
Mel: Yeah, I can ask Mom if we can move in. I’m working all weekend.
So, last week we started school, dance, gymnastics, moved out, packed up the entire house, moved in with Mimi and Bapa and gutted the house.
This week, while the house renovations move at record speed, MC has her heart cath.
I’m just holding my breath waiting for Mel to tell me he’s decided to open a sandwich shop or something.
Last Step
We are in our favorite city (outside of Hartsville, of course) and we’ve settled into our typical MUSC routine quite nicely already. It’s amazing how it all comes back to you. We knew we’d only be admitted for a short while, but I guess as creatures of habit, we’ve hardly missed a beat. We wake, order MC’s breakfast, shower, check out morning plan (echo, chest x-ray, etc.), visit Atruium, take meds, get on computer and update website, order lunch, etc.
We’ve had visits from some of our long-time nurse friends, Laura, Joy, and Brenna. Joy was Mary Clare’s very first nurse in PCICU after birth. We laughed together last night remembering how she had to use gel to stick a tiny pink bow to Mary Clare’s head. Mel has also had fun joking around with (tormenting) a few of the docs that have followed MC. Dr. Hlavacek, who did my fetal ultrasound diagnosing her HLHS, Dr. Hamilton Baker, who has been her cardiologist and yesterday performed her cath, Dr. Andy Atz, who has followed and researched MC’s case since birth and of course, Dr. Geoff Forbus, MC primary cardiologist. They’ve all become our friends.
MC had a scheduled heart cath yesterday. She also had her fenestration closure. And once again, in my non-medical terminology, I’ll try to explain it. (I actually listened as Mel explained it yesterday to a friend and he did quite well. I should have him do this.) So, a fenestration is a hole intentionally left in the heart after the Fontan procedure. The new circulation after her Fontan created added pressure, in which her little heart and body weren’t quite ready for. Dr. Bradley left the fenestration (hole) to release some of that pressure with plans to close it when her body was ready. Generally, this procedure is done about a year after surgery. We have been a tad busy this year, so it’s been 18 months for MC.
MC placed her EEG stickers on Daddy’s face.
MC laughing at her “Fuzzy Little Caterpillar” after taking her “Happy Juice” (Versed) before they wheeled her back.
This is where it hits me. Every time.
The amazing thing is how they actually “plug the hole.” We were shown a sample device exactly like the one that was used in MC’s heart. (Mel is stretching it apart in the photo above. It can actually stretch out into a tiny tube.) It’s made of mesh and metal material. It’s threaded through the cath tube and popped into place. Once it’s where it needs to be, they release it and it flattens. Tissue will eventually grow over the mesh material, making a tight seal. That’s just crazy to me. Right now some blood flows through the mesh material, creating a tad of mixture of O2 rich and O2 poor blood. Still, her Oxygen saturation levels were in the mid 90’s. She’s never had levels so high! Once tissue grows over the patch and completely seals off the fenestration, she’ll have even higher levels!! I hope Ms. Chure is ready for a higher energy Mary Clare.
How many nurses does it take to help Daddy? Daddy nearly fainted as the nurses tried (using an infant needle, I think) to draw a tiny vile of blood for genetic research. Mel and I have been participating in research studies since Mary Clare’s birth. We realize that the information gathered may not help Mary Clare now, but we feel sure that one day CHDs will be a thing of the past and findings may help her future. My grandfather had a blue baby over 50 years ago. He selflessly gave his son’s body to be used for research. The knowledge and information gained from Mary Clare’s great uncle helped discover ways for her to live and thrive. I know it makes a difference.
(A note to MC from McCanless)
This morning, we were invited to Camp Rise Above in the Atrium. MC walked into the familiar playroom a bit timid. Once she met the smiling faces of the staff and saw the activities waiting for her, she took off with her telemetry monitor dragging behind her detaching a few leads as she ran.
As we sat and played with the doll house, I noticed several other children. One little girl clearly going through chemo, another tethered to an IV pole. And while Mary Clare had a long day yesterday, she was feeling fine today with only leads and IV to show for her time here. Memories and emotions came flooding. Images of my three year old barely able to hold her head up, sitting in her wagon trying to paint in this very room filled my mind. I thought of the very night we were air lifted after seizures, we came to the Atrium to wait on Daddy. As an infant, I walked her into this room to see the bright sunshine and listen to the older children’s laughs. Amazingly, today Mary Clare was the healthier one. The Atrium has watched her grow and heal. It has made this life of hers normal. We had to drag her away kicking and screaming to get her echo, promising to return later. Not too long ago, I dreamed of her having the energy to be able to do that.
So, this one last step of her Fontan is complete. It’s a rather odd, but amazing feeling. What a miracle my sweet girl is.
The Chosen One
I have read five bed-time books, tucked and tucked and tucked the girls into bed. We have flowers in vases waiting for teachers, new outfits chosen and lunches packed and waiting in the fridge. Tomorrow is the first day of school, and it looks like it may be a long day, as it’s 10 pm and I still hear the girls whispering and giggling in their room.
McCanless is just beside herself with excitement. She can barely contain herself. She has been squealing since we completed her Summer reading papers today at exactly 4:30. (Nothing like waiting until last minute.) She read, “The Lemonade War” and “Mr. Popper’s Penguins” and completed two very detailed drawings and “reports” on her favorite scenes and characters. Not surprisingly, her favorite part of the assignment was illustrating the papers.
Mary Clare is pleased as punch that she has been chosen as Ms. Chure’s special helper this year. This summer after having a long conversation with Daddy, she excitedly explained to me, “Mom! Dad says that Ms. Chure has chosen me and ONLY me to stay with her in 4K!! I’m the only one that gets to stay!”
I’m so glad she has her Daddy’s confidence.
We decided last year that we would have her repeat 4K simply because we want to give her every opportunity to succeed. She’s had a rough go the last 5 years. With a late birthday and a bit of catching up to do, both emotionally and physically, we thought it would only be good for her. We adore her 4K teacher, Ms. Chure, and are thrilled to watch her learn and grow even more this year with her.
So tomorrow, I’ll pack my girls up for yet another year of school. I’ll have a third grader and a 4Ker! Where does the time go?
Today
Today was our first teacher workday at school.
The girls had a playdate with Mimi.
When I got home,
we played outside,
we cooked,
we had a fashion show in the den,
we visited with neighborhood BFFs.
I bathed the girls and tucked them into bed and hopped on the treadmill.
Daddy came home after his meeting and crashed with MC in her little twin bed.
He wanted a few snuggles.
Today was a busy, soon-to-be back to school late summer day.
Today, last year, I was told I had cancer.
Today, I’m cancer free.
Sweet Sweet Summer…
with lots of lazy mornings and afternoons with time to play
too much sun
trouble times two
too many birthday parties with too many sprinkles
sometimes too much downtime for Daddy
These photos were taken on a spontaneous trip to Carowinds. I pulled into the driveway on a Sunday afternoon (after a Mommies-only weekend) to find Daddy and the girls team sitting in his car, ready to roll. We headed to Carowinds for an afternoon of water slides and park rides. (Good thing he didn’t tell me where we were going until half way there. I may not have agreed.)
Cheers to a few more weeks of quiet, early morning coffee on my porch with no interruptions. We do love summer around here.
Sullivan Thomas
The girls team has a new cousin in town. (Literally) My girls are thrilled to announce the birth of their new baby cousin, Sullivan Thomas, on July 9th, 2012. Sullivan’s mom and dad, my sister and brother-in-law, also moved a few hundred yards from us this summer, too; so to say the girls are excited is a huge understatement! We’ve loved having them right around the corner and can’t wait to be able to teach Sully all about Barbies and costumes!
Remember this face? It’s Sully’s older “sister,” Coker, who has a special heart. She’s back home! (Coker is the stray puppy with a heart defect that the girls and I found in our neighborhood in March 2011, just before Mary Clare’s third open-heart surgery. Coker went to stay with my sister and brother-in-law out of town while we were in Charleston, and they immediately fell in love with her. Once we were home, recovering and learning to cope with Mary Clare’s new diagnosis of Epilepsy, we knew we couldn’t give Coker the care and attention she deserved and needed. (One heart baby per household for us.) She’s found the perfect family, and will now grow up with Sully. She has not needed heart surgery yet, but is doing well on Enalapril, twice daily. (Which is a medication used to treat high blood pressure and heart failure. It’s the same medication Mary Clare was on for so many years!)
Welcome Kacy, William and baby Sully and welcome back, Coker! We love you all very much!
Who needs a diving lesson?
Apparently, not little sister. After listening to McCanless explain the art of diving, she was ready to take off on her own. She simply didn’t have the patience to wait for her own lesson and literally dove right in.
The Beginning
July 5th, 2007 Mel wrote, “Today we are beginning what they refer to as ‘Pap trials’ where she tries to breath on her own for short periods of time. She has tremors which they assure us is completely normal although it is rather uncomfortable for a parent to sit and watch. She is slowly coming off of her meds over the next day or so and we hope to be off the vent tomorrow night if she continues on the track were on right now.
We haven’t been able to spend as much time as we would like today because they keep bringing in new patients from the O.R. and we have to be out for the hour that they stabilize them.
Mary Clare is opening her eyes from time to time and yawned once today. She is sleeping most of the time and she has been holding daddy’s finger today.”
……….
The 4th of July will always mark a huge milestone. It was the the night Mary Clare’s chest was closed and healing began.
When we learned of Mary Clare’s special heart, I knew we had a very long road ahead of us. It was the fall of 2006 and it wasn’t until the 5th of July 2007, that I allowed myself to breath and accept that my baby girl could actually make it. Sure, prior to that date, I told myself that she would be fine and HLHS babies survive and thrive every day. Certainly my baby would be one of those few who do so well throughout infancy and toddler years and grow to be a beautiful little girl.
In all honesty, however, I never allowed myself to really believe it. I guess it was a defense mechanism for to me face the odds and accept that I may be a mother to an angel baby. I wasn’t okay with that, but I believed that.
On the night of July 4th, 2007, two days after the most difficult surgery our baby would ever face, Mel and I strolled through the streets of Charleston, only pulling ourselves away from MUSC after we were asked to step out of PCICU as the surgical team closed Mary Clare’s chest. Hand in hand, we listened as fireworks exploded around us. We fantasized about having our family of four together next July 4th. We ducked into a little shop off of King street and stoically shared a pizza.
We never left Mary Clare’s side after that night. We vowed that one of us would be with her for her every waking moment. When she awoke the following morning, it was the first time she would have been awake since the night of her birth.
Seeing her open her eyes confirmed what every mother feels the moment they hold their newborn, fierce devotion. She was mine, even if only for a moment. This baby of mine, whom I had never held in my arms, was here with me now. I was chosen to be her mother and I loved her with every ounce of my being, how ever long that may be.
I would hold her in my arms for the very first time on July 10, 2007, thirteen excruciating days after her birth. Images of her intubated and sedated, wrapped in lines, wires and tubes haunt me still. Tears fill my eyes even now as I remember the familiar sounds and faces of the PCICU. My beloved PCICU, where our baby spent her first several weeks, where she was baptized, where we sat countless hours praying and hoping for miracles.
July 5th began a time of renewed excitement and uplifting hope. I began to tell myself that she would survive. She would thrive and walk and dance and laugh. She would attend kindergarten and she would grow to learn of her special heart and show others that odds can be beat. Miracles do happen.
It was the beginning for my spunky little firecracker, my special half-heart little girl.
Happy Birthday, Little Firecracker!
A little rain, and lightening and thunder didn’t ruin this little firecracker’s 5th birthday pool party.
We simply packed up the fireworks and hot dogs and headed indoors.
It amazes me that I have actually kept up with this blog for 8 1/2 years. Mel created it and actually wrote the very first entries, promising me that he would be a frequent writer. (I can probably count on one hand how many entries he’s actually written.) I would have never guessed in a million years all of the topics I’d cover. Sure, I knew this blog would see McCanless grow and maybe add a sibling along the way, including photos of all of their firsts, family vacations, and memories.
What began as a brag book of sorts morphed into a very real outlet for me. A place to sort out life and vent to world. I’m a very private person.
Ironic, I know.
This blog has been my solace, my release. I can only hope that one day, as McCanless and Mary Clare read my words, they know that it isn’t only what I’m saying, but what so many people have read, others who have loved and prayed for them over the years.
This blog parallels life. Ebb and flow. Some months, my entries are filled with certain struggle. Words come often and easily, sorting out complications, conflicts. Other months, life is busy. Days slipping away so quickly, leaving little time for thought. These are the months I treasure most. I should probably write more during these months to savor the fun and chaos of our young family.
Tonight, as I sit and try to consume all that this blog represents and all that it has seen, I hear giggles from the girls’ room. Daddy caved and tucked them into bed yet again. This is after he got them juice, read a book, laid down for 15 minutes, and tucked them in 4 times previously.
Our life isn’t unlike anyone else’s.
We fall apart sometimes, we laugh hard, my girls melt down in the grocery store, get in trouble, we love. I melt down, Mel freaks out and we all wake up and start all over again. Every single day. Some chapters are easier than others, but each one has taught us.
Our life is exceptional. There is nothing that this blog has seen or that I’ve written about that I would change. Ever.
It is who we are.
Cheers to more months filled with only two or three blog entries! Life goes on! Life is grand!
June Countdown
Five…Number of years that we’ve been graced with “The Bear,” her papi, and all of her antics. I can’t believe my baby will be five on June 27.
Four… Number of times that Mel has A) Flown out of the state without telling me again or B) had overnight conferences in swanky hotels in far away places that he mentions to me merely hours before departure and adds, “Oh, did you want to go?”
Remind me that I do love this man.
Three… Number of miles I can actually run (without stopping) now (and without someone chasing me). I can’t believe that either. I completed my first “official” 5K in 31:37 on June 9, 2012. 8th in my age group-not so bad-at least it’s not last! (Okay, so I’ve “participated” in (to put it nicely) the Hartsville Thanksgiving Day Turkey Trott 5K for many years, but that’s more of a social event, and doesn’t really count, especially with my, um, “time.” Several weeks ago, on a whim, I asked one of my oldest and dearest friends (and college roommate) to run in a 5K with me to celebrate the end of my cancer ordeal. She didn’t hesitate and we crossed the finish line of our very first 5K together! We’ve reluctantly decided to continue our “training” and go for more!
Two…Number of summer tumbling classes it took Mary Clare to realize she wants to be a “GymTastics Girl” when she grows up.
One…Days until I travel to New Bern, NC to pick up my little camper! McCanless has been at Camp Seafarer this week and I’ve missed her so! This is her second year attending, and she was counting down the days on her wall calendar last month until we arrived. She was so excited! I’ve been counting down the days and minutes until I pick up my big girl! I’m so excited!!
AgesThirteen and Ten
Today, I started Tamoxifen.
Honestly I only started today because tomorrow I’ll see Dr. Butler, my Oncologist, and I’m afraid of what he’ll say when I tell him I’ve only taken it for two days. He wrote my prescription a couple of weeks before my radiation treatments ended (back in April) and told me to begin the day after my last treatment. I really don’t have a great reason for postponing it.
I just did.
I guess, for the first time since last August, I didn’t have a treatment, medicine, or anything having to do with cancer on the docket and it felt nice not to worry about it. I’ve never been much of a medicine taker, but I guess that will have to change. MC takes two different seizure meds three times a day, and an asprin everyday, and this week: an antibiotic for sinus infection, nasal spray and eye ointment 4 times a day. So why not throw in a little anti-hormone pill for me.
I have to take it everyday for the next 5 years.
When I complete my Tamoxifen, McCanless will be thirteen and Mary Clare will be ten, which seems like an eternity away.
Five years ago, I was nine months pregnant with Mary Clare and would soon begin one of the most amazing experiences of my life. I had no idea how much joy and pain her presence would bring. Tonight, as I was in the kitchen, she clamored in on a pair of McCanless’s hand-me-down pink and purple skates two sizes too big, a green leotard, and hot pink Halloween gel in her hair as she ate a banana.
How different life would be without my tiny miracle.
How amazing the last five years have been.
So, cheers to the next five. I can’t wait to see what they have in store for us! Bring on the Tamoxifen, hot flashes and all!
2012 Dance Recital
Mommy is always too busy watching and laughing or crying while my baby girls dance on stage to get good photos. (Or too busy running back stage to help my big girl change costumes. McCanless was in 6 different dances this year!) I could not be prouder of both of my dancers.
THA Mother’s Day Program 2012
Guess who stole the show?
and my heart.
Portrait of Mommy by MC
Click here to see McCanless’s 5K Mother’s Day Program and here to see her 4K Mother’s Day Program! Such wonderful memories!
Pennington Family 1 – Cancer 0
In her usual quiet way, Kerri finishes her last treatment in just a few minutes.
She didn’t want to make much of a fuss about it, and really didn’t feel up to celebrating, so we came over with just the girls to finish her battle.
If you feel like telling her great job on a hard fought battle, send her a text message at exactly 3:30.
I call it the Victory Text Bomb and it is sure to leave a lasting impression on such an emotional day as this.
Thank you all for encouraging, praying, and helping her through this most difficult journey. Others aren’t as fortunate, some have to do it alone, and many never complete the journey; however, we’re blessed to have your love and support — and of course, to defeat this nasty thing we call cancer.
See you all back home soon,
Mel, McCanless, and Mary Clare
Easter 2012
McCanless’s eggs
What was left of the Bear’s eggs.
(She would paint one, eat one, paint one, eat one.)
So, remember when I said I was in that 5%…
of chemo patients that have straight hair? Remember that? Dr. Butler specifically told me that 95% of chemo patients that lose their hair, regrow curly hair. As I’ve slowly watched my shiny bald head grow white fuzz, then grey spikes, then thick dark hair, I’m slowly realizing that it isn’t quite as “straight” as I once thought. In fact, McCanless took a photo of it with my cell phone to convince me.
Do you see that?
Okay, so I know it’s not curls, but that is hair that is definitely not the bone straight hair that used to grow from this head. (I also realized that the back of my hair is much darker than my, ahem, salt-and-pepperish front. Slight sigh of relief.)
Then tonight, after my run…(Don’t be impressed. I’m trying to get back into shape and rid my body of radiation toxins. It’s a slow start, but I’m determined to get healthy again. I’m finally down to my pre-chemo, non-prednisone weight, but I just feel sluggish and mushy, so I’m working toward a healthier body.) …and this is what I discovered:
I took this myself with my cell phone and it’s a bit difficult to see, but my hair was completely flipped up in the back. Crazy. So, we’ll see how this pans out. It’s already very poofy on top. I even use hair products, which is a first for me.
It’s Beach time again!
This weekend, while Daddy spoke at a funeral convention in Florida, the girls team packed up and headed to the beach. I love dropping everything and just hitting the coast with my favorite side kicks. We had a wonderful weekend, just the three of us!
Slumber Party!
Dear McCanless,
Tonight, as you explained a playground story to me, my heart broke. You reminded me how hard it is to be a child sometimes. You are so mature and so insightful, especially this past year when Mommy needed you to be so brave. You are patient and giving. You have humor and wit beyond your years, a beautiful smile and adorable freckles.
As you grabbed me and cried like the 8-year-old that you are and that I sometimes forget you are, you explained how you “laughed with them” at school. You did that because that’s what you do, my sweet girl, you love to make people laugh, even at your own expense. You have so much of your mommy and daddy in you, it’s wonderfully amazing, and yet sometimes hard for me to consume. I know the trials you will face. I can almost see them coming. I know how hard life will be for you sometimes and I know I can’t protect you from it all and my heart breaks for you.
Everyone has been teased. I know that words hurt and I know that you don’t understand why some friends say things that cause tears. I always tell you that what is in your head and what is in your heart is far more important than what others see on the outside. You are confident and beautiful. Please don’t let others tell you that you are not.
Differences make the world a better place. How boring the world would be without all of the McCanlesses and Mary Clares in it. You, McCanless, bring smiles to faces simply for being you.
Trials that you face even now make you a stronger person, a more tolerant, patient and graceful person. You, my sweetheart, are a beautiful swan that will emerge gracefully inside and outside. I love you more and more everyday and I can’t wait until I see the amazing, talented and understanding woman that I know you will be.
Although we have talked and I have said these words to you so many times before, what happened to you today will be what you remember. It’s funny how one thousand kinds words can be spoken and lost; yet, those two or three words that were hurtful will be with you forever, remembered in vivid detail.
I’m so sorry you were hurt. I’m so sorry to see you cry, but I do hope you remember what happened and how it made you feel. I don’t want to erase what happened. You will be a stronger person because of this, McCanless.
Life isn’t always easy. It’s a constant journey that molds you into the person you were meant to be.
I love you dearly, my sweet McCanless.
Love, Mom
Yes, I still plan on keeping up with this blog.
Wow, today I completed #28 of 33 treatments! It’s so hard for me to believe. It’s actually flown by. Probably because I’ve been super busy at school, with the girls, and life. (As every other mom is.) This week, “we” put together a Double Bubble Gum costume, a flower costume and are working toward a Katherine Hepburn costume. Field trips, programs, projects, dessert theater, etc. etc. Next week, dance photos, finalizing house plans, a few doctor’s appointments, and end of year “stuff.” Its always gets crazy this time of year (especially this year) and I love it.
Today, I also started my concentrated radiation (which is my translation, of course). My last six treatments will consist of radiation specifically directed at my tumor area (where it once was) and lymph node area (where they once were), basically, zapping my scars. I shouldn’t have much more redness and burning on my large tan square from this point on. It’s pretty funny and very, very tan. It’s a bit tender, but has yet to be painful. The stickers covering my paint marks (for alignment) have proven to be more of a nuisance than anything. Apparently, I’m allergic to the adhesive on the stickers which also burns my skin. So, at this moment, I have a large tan square and about 8 or so little tan/burn circles from the stickers. It’s a great look.
I realize I have not posted a single photo all month. Sigh. My girls were adorable for Easter and I did manage to take a photo with my iphone. (My poor Nikon is dusty.) Alas, I’ve (temporarily) lost those photos. I ran over my phone last week. (Don’t ask) Thank goodness for insurance…Brand new iphone in a few days-have yet to transfer and sync everything.
I had another fantastic photo op of McCanless in all her pink glory as a big piece of Double Bubble gum this week, and…
I smashed my brand new iphone as I ran to the car with said large gum costume, pocket book, pair of shoes, screaming 4-year-old and jet pack* in my over-stuffed hands. I made it to the car (and the program in time) but I dropped the phone on concrete only to smash it to pieces. No photo of my precious pink gumball.
What’s that saying? A day late and a dollar short.
Mel is speaking at a Funeral Director’s convention in Florida this weekend, so it’s a girls team only weekend. We are planning on soaking up the sun and having a great time with no homework, no projects, no costumes and no place to be at any specific time.
*The jet pack is MC’s emergency pink back pack that goes everywhere she goes. It contains her emergency seizure meds and a portable oxygen tank. It’s pretty heavy. Lesson One: I can’t carry everything (and the kitchen sink) at once, no matter how late I’m running. Lesson Two: as much as I hate it, I need to dig out my huge, yet protecting, OtterBox again, and use it. Lesson three: Phone insurance will only cover one smashed phone in a one week time period. Lessons learned.
Still going…and going…and going…
I think I’m less like the Energizer Bunny and more like the batteries themselves at this point. (wink) Actually, I’m having very little side effects from radiation. I think the drive to Columbia wears on me each day, but honestly that doesn’t even hit me until I stop. It’s when I actually sit down and have a moment to think about how long it takes me and how often I make the drive that makes me tired. I do have a nice sunburn square on my chest and breast. I’ll have a nice tan square when it’s all said and done, I’m afraid. The clear, circular stickers that cover my paint pen marks (for alignment), also leave a nice little odd tan mark. It will take a while to get these lines to fade and “even me out.” More beach time will take care of that I’m sure. My oncologist won’t mind at all.
I think it’s funny that my last post was #13 with 20 left. Today, I received a call that my specific machine was down, so I was able to skip today. Monday was my #20 with 13 remaining to go. Soon I’ll be down to two hands!
Life continues on. The girls are busy with spring musicals, dance recital practice and end of the year cramming. Honestly, I couldn’t have planned a better time to have ended chemotherapy and started radiation. December 27th was my last chemo treatment. It marked the end; a fresh start with a new year ahead. Right now, I’m in the thick of radiation and Spring and I’m probably as busy as it gets. A perfect time, as far as I’m concerned. It keeps my mind and body busy, which makes each treatment speed by.
Today, after MC’s dance class we visited Ms. Janie’s shop. Ms. Janie has probably altered every one of my Easter dresses, dance costumes, and prom dresses (back in the day) and even a few maternity dresses. Now she also hems and stitches for my girls. As Mary Clare proudly twirled in her new purple flowered, velvet recital costume that was no less than 4 sizes too big, I noticed myself in the wall sized mirror in the overfilled shop.
And I liked what I saw.
I actually liked my hair.
Sure, it’s not my usual long and light brown hair. I can’t braid it or twirl it, as I long to do. But for the first time, I saw it in a new light. I’ve tolerated it, at best, up until this point. I even got a hair cut last week.
I realized at that moment, that same mirror has seen me in so many stages of my life. Like Mary Clare, usually at my proudest in my “Sunday Best” showing off and spinning as Ms. Janie works her magic.
I haven’t felt my Sunday best lately, but today reminded me that everything is so very temporary. I should enjoy it and like what I see in the mirror everyday. Life keeps going and going whether you enjoy it or not.
So, when another customer walked into Ms. Janie’s shop and complimented my short haircut, I didn’t go straight into my “well… it’s actually not short by choice” story. I simply said, “Thanks, I like it too.” No explanation. No need, because I do like it. Finally.
Lately
1- Today, I completed my 13th treatment. Only 20 to go! I’ve actually enjoyed my daily drives to Columbia. I grab my coffee every morning and crank up the iTunes. (My 2001 Tahoe isn’t equipped with a fancy outlet to hear my iTunes through the speakers….like some Mayor I know, so I rock the ear buds.)
2-Mel finally got a “new-to-him” Tahoe last week. I’m super happy for him. He felt so guilty, but I finally convinced him that as long as we can still plan on the two new bathrooms and kitchen upgrade this summer, he should go ahead and get it. He’s worked so hard. It’s certainly well-deserved. It’s a couple of years old, but still has every bell and whistle you can imagine. The girls love to ride with Daddy now.
3-I’ve officially not worn a wig since our trip to Chicago. I wore my newest blondish wig the entire trip-enough to convince me to never wear a wig again.
4-I just mailed McCanless’s summer camp forms off for this summer! She’ll go for just a week again this year. I’m not quite ready for her to go any longer just yet.
5-Mel and I went to the see a movie together last night. I think it was the second movie we’ve ever been to, just the two of us. Not kidding. I’m not a movie girl and IF I go, it’s usually to see Rapunzel or Dolphin Tale or something of the sort with the girls-not typically a Mel kind of movie. Since the girls were away, we took full advantage. We even ate Mexican beforehand and snuck in M&Ms and Junior Mints. Did you know a Hartsville Cinema Twin movie ticket is $2? (I swear it’s a legit Regal Cinema, too.) Funny, because our small popcorn and drinks were $15. We saw The Hunger Games since I can’t seem to get middle school literature out of my system. I read the trilogy last week just so I could see the movie while the girls were away. As always, the books were far better than the movie. Which is why I don’t like movies.
other stuff…
I have so much to think about on my morning drives to Columbia. I need to take a tape-recorder to capture my thoughts. They’d make great blogging material. And speaking of, it seems my blog has taken a backseat lately with all that is going on. Spring is filled with upcoming programs, dance, end-of-school excitement and cramming. This week is Spring Break and the girls are at the beach with Nonnie, Kacy and Kate, soaking up the beach sun and sand until we can officially go uninterrupted by school. We are all so ready for summer.
Mel and I were asked to be the torch bearers at the opening ceremony of the Relay for Life Luminiara Ceremony next weekend. Wow. I’m so very humbled and honored and saddened and happy to have the privilege to do so. We don’t have a team this year, as we got a really late start. I think we’ll just invite friends and family to walk the opening lap with us. (Maybe even get working on that “Half-a-Brain, Half-a Heart and Half-a-Boob” shirt Mel thought of so long ago.)
I’ve also been asked to write something to be read as we take our first lap. I guess throughout all of this, it’s been hard to believe it was/is even happening to me. Even now as I walk out of SCOA everyday strong and healthy, I feel sad for the not-so-healthy people I see. I know I shouldn’t. I’m on their team. Technically, I’m not even considered “caner-free” yet. But it’s one thing that I hated. I never wanted anyone to feel sorry for me. Cancer is a part of life. Sad, but true. Why shouldn’t I get cancer anyway? Why should I be spared when so many others aren’t? I knew I would fight the battle and move on. Get on with life.
I’m learning everyday that it isn’t such an easy journey for others.
I think of one woman in particular. She’s probably not much older than me. I don’t know her name, although I should. I see her every morning. Waiting. She’s in a different waiting area and always has someone with her. To drive, I imagine. Although she’s always on the radiation side of the building, I noticed the tell-tale signs of a chemo patient: thin, whispy hair, yellow skin, deep circles around wide barren eyes, a frail walk.
After several mornings of casual waves and hellos, grasping onto her husband, she asked me what size guard I used on my clippers. I laughed and explained that months ago after a trip to my hair stylist and getting 7 inches chopped, Mel used a #2, then #1, then nothing. I told her that I, too, was going bald due to chemotherapy before I made the decision to shave it. My current style was not by choice, it is what has resulted from what chemo took from me months ago.
“My chemo didn’t work, which is why I still have some hair left. I’ve stopped chemo now. I’m taking radiation as a last ditch effort.” she said with a smile. Then continued on with how amazing my hair looked.
What I thought was self-confidence is merely arrogance. How dumb of me to waltz through SCOA as if chemo, radiation and cancer is easy.
Which is why I’m having such a hard time finding words to write for the Luminiara Ceremony. Cancer isn’t easy, but for some reason, I have been blessed with health. Despite cancer, despite chemo, despite radiation. I shouldn’t have the honor of carrying the torch. So many others have fought this battle and have had to sacrifice so much more than I have. Even Mary Clare has battled much longer and harder than I have. She has overcome the odds and has learned to live life to the fullest every single day despite how difficult it can be for her.
I’m not deserving to carry the torch. At this moment I can think of so many others who have been sick for years, or my friend Betsy who lost her mother, or my new friend who is desperately hanging onto hope that radiation will work. These people have suffered because of cancer. Their lives have forever changed because of cancer.
I can only hope that God gives me the courage to represent those of us who have fought the battle and won and the words to touch those who have not been so fortunate.
This morning, I noticed my new radiation friend has a short new hair cut. Gone are her thin, brown, wispy locks. She winked at me as I walked by her in her waiting area. She pointed to me and explained to her friend that I was her inspiration.
If only I had the nerve to stop and tell her that she is a true inspiration. She has taught me so much more than she will ever realize.
6 Down!
Today, I completed my 6th radiation treatment, and so far so good. I do have a red upper chest, and face, and arms…and legs, for that matter. I can’t say it’s from the radiation. Although if one more person proclaims, “Wow, look at that sun burn,” I think I’m going to tell them it is from the radiation. (wink, wink)
My radiation girls frowned upon my sun burn from the weekend. Apparently, it’s not so great for my skin to have both sun and radiation beams burning it simultaneously. (The long days spent on the beach this weekend were completely worth it, however, just so they know.)
I’m continuing to drive to Columbia every morning, and I make it there by 9:00 am, only to walk out by about 9:15. I return to work by 11 and work until 3, my usual hours, just opposite of my typical 8-12. It’s working out nicely for me. I actually enjoy my hour drive alone, with my music and my coffee. No Pinkalicious Musical, no Taylor Swift. No one fighting over which channel or who has the iPad, or iPod or which set of headphones. No spilled drinks. It’s quite a nice drive.
Mel, on the other hand, isn’t a fan of the early mornings. I’m sure he’ll be happy when we get to #33. I leave around 7:15, just as the girls are awake and starting to dress. He’s in charge from there. It is getting better, however. He let me know that he did offer the girls breakfast this morning (without takers), he had them brush their teeth and had their hair brushed.
Dare I wonder what was accomplished on days 1-5 of my treatment? Oh well, at east they were only 10 minutes late today.
We’ve been busy with trips to the zoo, the parks in town and the beach with Nonnie, and the usual dance, school and friends. McCanless has even been involved in a mini-basketball team at THA. She had her first game last Wednesday. She’s a key player on her team. I’m afraid it’s more about her height than skill at the moment, however. (She’s the tallest kid in her 2nd grade class and most of the 3rd graders as well.) If only she could leap and twirl across the court with the ball, she’d take ’em down. Her team, “The Green Machine” won their first game and I was so proud of her. She does very well at acquiring the ball. We need to work on what she does with it once she has it, though. (Rather than pass it to the closest person on her team.)
Life is busy. Life is good. Radiation will be complete before I know it and we’ll be soaking up more sun on the beach and by the pool.
Whew!
It’s been a crazy busy month so far and it’s only March 21st! Where does the time go? Thankfully, it’s passed along quickly and hopefully it will continue to do so. I’ve begun my radiation treatments! Yahoo! Two down and 31 to go! I’ve only had two, but so far so good. I’ve felt great both days! I’ve been tired, but I think that has more to do with having a bit of jet lag and exhaustion from a fabulous trip to Chicago this past weekend. Plus two girls that insist we play outside in this warm Spring and keep busy until dark everyday, which is just fine with me.
Here’s how the past two treatments have gone…
7:30 AM Drive to SCOA-1 hour and 15 minutes (depending on traffic)
9:00 AM Walk in/Check-in-Receptionist waves me back to Women’s Waiting Area and says, “Good Morning”
9:01 AM Undress and put on lovely mauve hospital wrap and take a seat in waiting area.
9:05 AM “Pennington” is called on the over head speaker just as I get settled and pull out my Kindle.
9:06 AM I sign my initials after seeing my mug shot on the computer verifying that it is indeed me getting ready to be zapped-although I’d love to deny that awful photo.
9:07 AM The ladies in my RAD room ask me to lie on the table, line me up and chat with me briefly before they exit the room. I am exposed waist up.
9:09 AM The ladies take two X-Rays to verify placement. They exit the room again.
9:10 AM I lie on the sheet-covered metal table in the cold room as the machine circles me and makes zapping noises. Every few seconds I see red beams on the ceiling or on my chest. (These are the beams that help alignment.) I see a computer overhead. Every second and for every movement of the machines, numbers constantly change. I feel nothing but the cold room.
9:20 AM The girls come back in and tell me, “all’s well, see you tomorrow.”
9:21 AM I head back to my dressing stall, dress and head out being sure to speak to everyone on the way out.
9:25 AM Head back to Hartsville
Repeat 31 times.
Today, as I walked out of the Radiation Area of SCOA, and as I passed by patients and caregivers waiting on treatments, I held my head high, walking quickly and confidently. I was so proud. Proud that I am where I am. Proud of my super short hair, and proud to say that I am near the end of my treatment. For the first time I wanted to tell everyone that I passed by, “I had cancer. Look at me now, I’m healthy and strong.”
It’s an amazing feeling.
McCanless
I met a blog reader yesterday (and new friend) in NC at a dance competition. After a brief introduction and explanation and figuring out who was whom (as we also have a mutual friend), she mentioned that she recognized McCanless.
What?
I just knew my short do was a dead giveaway. Surely, she recognized me and my crazy “chemo hair.”
For a moment, I was dumbfounded.
It hit me like a ton of bricks.
The past 7 months have been about me. My bald head. My cancer. My chemotherapy. My trials. Me.
And if I’m honest with myself, the four years leading up to this point have been about Mary Clare. Her surgeries. Her recovery. Her seizures. Her medications.
And life is always about Mel. Our world always revolved around his recent passions, ideas and creative spirit.
McCanless once said to me, “You, Dad and MC each have ‘something,’ what’s mine?”
As I watched my insightful girl dance on stage yesterday, I remembered that she was only three when she learned the harsh reality of life. She learned that sometimes it isn’t fair. She learned to live without Mommy during the same month that she learned to swim without floaties.
She learned that baby sisters and life can be fragile.
And she was reminded of that again this year.
Unfortunately, she knows what a port is, the ugliness of a seizure, and how to ignore scars.
She’s mature and patient beyond her years. She’s amazing. She’s recognizable. Not only for her sweet spirit and smile, but for her contribution to our family. I hope one day I can truly explain that her ‘something’ is her.
Radiation Update…
I met Dr. W last week at SCOA and I couldn’t be more thrilled. He’s my Radiation Oncologist and I’m in love. (You know, in that “he could be my dad” sort of way.) My appointment was at 11. I walked into SCOA at 10:50 and was immediately shown to my room (which is opposite of my SCOA norm). Radiation to the left, Chemotherapy to the right.
I’m heading left, baby!
I was shown a video which explained everything about radiation, what to expect during my visits, and gave me a virtual tour of the types of machines and procedures I’d be exposed to. Then Dr. W came in and chatted with me for a while. He was amazing. Love that man. And the best part is that he will be working with my other favorite Oncology doctor, Dr. B! It’s all teamwork here, people.
And the best part? No tattoos. No breath hold technique!! Yes! Bring on the beams!
I return Monday for my simulation appointment and I’ll get started with my 33 treatments 4-5 day after that. Can you tell I’m happy? Yay. Countdown is ON.
It’s a… Moon Pie!
Last night, we headed to Columbia for dinner with Kacy and William for a “small” dinner party. If you know our family, you know we don’t do anything small-last minute, completely unpredictable and usually unplanned; but never small. Last night was no exception. We laughed about, cried over, predicted, chatted and celebrated the newest little one in our family.
Kacy and William had their 20 week ultrasound last Monday, and among finding out that Baby Keels is a healthy baby, William discovered the gender. Kacy decided to wait for her “Keels Reveal” dinner party last night. We ordered a cake and William called the bakery to let them know if we needed a pink cake or a blue cake. We had it decorated as a Moon Pie, simply because that’s what we’ve been calling Baby Keels since we learned of Kacy’s pregnancy. (…and it would require chocolate icing, making it more difficult to see pink or blue cake-my family totally doesn’t trust me. They thought I’d peek.)
I took my camera, but I was too excited and completely forgot to take photos. Thankfully, Kate was snapping photos all night with her cell phone.
MC and Uncle Alston
It’s a….
BOY!
This baby has LOTS of happy Aunts and Uncles and two extra excited cousins… (and we’re even missing an uncle in this photo!)
..and plenty of fun friends to fill-in!
Mommy, Nonnie and Yet-to-Be-Named, Keels Grandmother
Baby boy, we are so excited! We can’t wait to meet you and welcome you into your amazing family.
First pair of heels…
So, let me explain. McCanless’s BFF, Eliza, recently turned 8. Eliza’s mother promised her a big girl party in the ballroom at Prestwood Country Club. (And although it sounds like quite a swanky place, it’s really just a dated recreational room holding a lifetime of memories. Mel and I even danced our first dance as husband and wife in the ballroom by Prestwood Lake in May 2001. And I’m certain most Hartsvillians can recall many, many years of dance classes, wedding receptions, cotillion affairs, baby showers, afternoon teas and lazy afternoons of ping pong sessions at Prestwood snack bar at the far end of our beloved ballroom.
Our own girls have already made plenty of memories within the gates of Prestwood Country Club. McCanless and Mary Clare have spend hours on the playground with neighborhood girls, at birthday parties by the picnic area and feeding the geese by Prestwood lake. Each summer we log miles on our golf cart traveling with picnic bags and towels in hand ready for summer days by Prestwood pool.
A few weeks ago, McCanless eagerly explained to me how excited she was to attend Eliza’s birthday party in the ballroom.
“Mom, everyone is wearing heels. We need to go shopping.” This was about 2 hours before the party and made me stop dead in my tracks.
“Heels? McCanless, you are way too young to wear heels.”
“Please mom. Pretty please? Can we go look?” she pleaded.
McCanless did happen to need new dress shoes for church… I’ve held off as long as I could, and realized that we wouldn’t be making it to Easter (as I had hoped) when we’ll trade in her black patent leather “Sunday shoes” and tall boots for cute Spring shoes and sandals.
I’d have to suck it up and buy one more pair of sweet little black patent leather mary janes for her party.
We only had time to zoom to the local department store, where we quickly learned that they no longer have a children’s section?! (When did that happen?) I saw McCanless eyeing the women’s section and I begrudgingly walked behind her telling myself that I would not buy her a pair of women’s shoes, especially not heels.
There is no way she fits into women’s shoes.
She wears a woman’s size 5 1/2.
We compromised on a little pair of neutral wedges. Not too big girl, not “babyish,” according to McCanless.
An hour later, in her Christmas dress, brand new “heels” and donning just hint of blush, McCanless eagerly skipped into Prestwood Country Club for her first big girl party. The ballroom was filled to the brim with pink and white balloons and pom poms and was already thumping with music from the DJ. She found Eliza and left me by the door.
The photo above was taken when I picked her up at 9:00 pm, just after I stuck my head in the front door and saw her completely sweaty, running around playing chase, barefoot. I couldn’t have been more thrilled to see my big girl being the little girl that she is. After giving me a huge “this was the best night of my life” squeeze (in front of all of her friends), I asked her to put on those fancy “heels” for one quick photo. I’m almost certain she’ll never wear them again.
She was so giddy and excited from her night. She chatted non-stop on the short ride home and as I sat with her in the bathroom while she bathed. She continued chatting away about her magical party until I tucked her into her bed.
I hope she will always be as eager to share her stories with me. (I’m also hoping she’ll be as eager to throw off her “heels” and have fun with her girl friends for a long time, too.)
Pinkarific
Ella, MC, and Ashby
The girls and I recently went to see “Pinkalicous, the Musical” in Camden with a few school pals. To say Mary Clare loved it is a huge understatement. She sat mesmerized throughout the entire musical, which is HUGE. It’s no surprise, her obsession with all things Pinkalicious has resurfaced. We’ve pulled out all of her old favorite books, Pinkalicous, Purplicious, Goldalicious, Silverlicious, and once again, her Pinkalicious, the Musical CD plays in the car non-stop.
The big sisters in our group had a great time too, although they would probably never admit it.
Square One
After a couple of initial visits to a closer hospital for the start of my radiation treatments, I’ve decided to return to my beloved SCOA for my radiation, despite the hour and 20 minute long drive to Columbia it will take to get there. (Times 2- for round trip, for 45 days of treatment…yikes. But completely worth it, in my opinion.)
This is after a panicked call to Dusty, my SCOA oncology nurse, after I just wasn’t “feeling” my new oncology center. (My only reason for trying out the new center was simply for the fact that it was closer.) She assured me it was her that I was having separation anxiety from and calmed me down. Still, after a few conversations with Dr. B, my SCOA oncologist-the mac daddy himself- it seems that SCOA will be able to better meet my needs and deliver what he feels is necessary treatment for me.
Apparently, I have some sort of weird narrow chest (and not much in the boob department anyway-no big surprise there) so my treatment will consist of the breath hold treatment, which isn’t as far fetched as it sounds, so they say. Because of my abnormally (ahem) small upper chest area, my lungs and heart are all squished together making bypassing them a more difficult task than it should be. (Radiation beams are shot across your chest, not into. I tell you, I should be a medical linguist.) With the breath-hold technique, the radiologist will be able to minimize as much radiation exposure to my heart as possible by having me breath in and hold, which will push my heart back into the chest cavity.
Yeah, no matter how I explain that, it still sounds a little crazy.
SCOA will use IRMT along with the breath-hold technique. “Intensity-modulated radiation therapy (IMRT) is an advanced mode of high-precision radiotherapy.” In other words, all radiation is precise but IRMT is extremely precise. Another fun little tidbit: I’m getting a TAT or two! The radiation oncologists even tattoo patients to ensure precise location of each treatment. Crazy. There’s all sorts of molds made and measurements taken. I was even warned not to fluctuate in weight. It’s all precisely measured and checked and re-checked and checked and monitored again and again.
Because I’ve decided to make the switch to SCOA, I’ll be back at square one, meeting with my radiation oncologist and starting the whole radiation process once again. March 1st is my (second) initial “Meet your Radiation Oncologist” visit. This time at SCOA. I’m sure I’ll hear all about it again. (Which is a great thing-I never actually hear them the first time anyway.)
My hair is growing like crazy and it’s totally gray. I knew I was going gray, but I had NO idea how gray it was until now. I rarely wear the wig-she’s looking a bit sad anyway, tousled and stringy. I debated buying another, maybe totally different, but wearing it drives me crazy. It just feels tight and itchy. I guess because I actually have real hair underneath now. (Yay!) My eyelashes are growing back too, but are a bit odd. They are wiry and short, like little spider legs.
Life is busy and slowly getting back to normal. Actually, it’s completely normal. The only difference is the occasional double-take or lingering look in the grocery store or gas station from my Sinead O’Connor do. It’s liberating to be out in public and completely fine with my “not so typical” look. A year ago, I would have never thought I’d be brave enough to be out in public with a near shaved head.
Funny how much can change in a year, or even a blink of an eye for that matter.
Dance Dance Dance
McCanless and I, along with her dance team, headed to North Carolina this Saturday for the first competition of the 2012 year, Star Systems. (MC was with Nonnie and Kate at the beach celebrating Nonnie’s birthday. I owe them-MC would never last all day at one of McCanless’s dance competitions. She’d be swinging from the rafters half way through.)
McCanless never ceases to amaze me. I love watching her perform and her dance team did an amazing job on all of their dances. Of course, I wasn’t allowed to take photos during the competition performances, but I was able to snap these with my cell phone as the girls practiced in the lobby.
“Paruchi Party,” the Production Dance, which combines all three teams-Petites, Juniors and Seniors- was amazing and won Top Overall. I love watching all of the various ages dance together and interact. (The big girls are simply breathtaking to watch, especially McCanless’s Dizzy “big sister,” Julia. Julia was a student of mine at THA for three years and is now a senior in high school. I couldn’t ask for a better role model for McCanless. We were all so proud of all of the girls. They’ve worked so hard and deserved the win. Go McCanless! Go Julia!
The Petites
It was a long day filled with 5 costume changes, 200 bobby pins, 100 safety pins, hair spray, hair gel, hair bands and lots of dancing and kisses and chaos, and cheers!
After a much deserved sleep-in this morning, we all went to Florence. McCanless and I dropped Mel off at Best Buy so we could get pedicures and shop. We had a fun Mommy/McCanless weekend! I missed The Bear, but loved the time with my big girl.
(While McCanless and I were busy shaking it up on Saturday, Kate sent me these photos of the bear at the beach…)
Happy CHD Awareness Day 2012!
Happy CHD Awareness Day, my one-in-a-million miracle. It’s ironic how your half-heart is filled with more passion and spirit than most of us with full hearts and how someone as tiny as you has made so many people realize what life is truly about.
Did I mention that Mel’s nightly engagements also took him out of town all week? Yeah, neither did he.
Mel called today from out of town and happened to mention, “I’ll see you girls on Thursday night.”
What?
At least he’s not in another state. The last time Mel forgot to mention a business trip to me, he called from Tennessee.
Yes, I’m still planning on keeping up with my blog…
Wow, when I thought I was ready to get “back in the swing of things” I never realized how busy we actually are. I love being back at work and hearing stories of Mary Clare on a daily basis, and seeing McCanless be the “cool” second grader that she is. (Especially after those grumpy, not-so-happy morning rush days).
This past weekend, we celebrated the long and happy life of Mel’s grandmother, “Nana,” who passed away on Friday morning. We also celebrated four birthday parties, missed a Valentine party, watched McCanless hip hop during half-time at a Coker College game, and had a fantastic time visiting with family who traveled to honor Nana’s life. To say our weekend was busy is an understatement.
Valentine’s Day is tomorrow, and if you have ever worked in a school (especially middle school area) you know it’s like the day before Christmas break.
McCanless has a dance competition this weekend.
My mom will turn 61 this weekend. (Which made me realize my actual age last night while soaking in the tub-with both girls. I could have sworn I’m only 34.)
Mel has at least one speaking/meeting/social event every single night this week.
Oh, and while I officially stopped wearing my wig in public, I threw it on this morning again. During our unseasonably, nearly 80 degree days, it was fine. This morning, after a weekend of wearing hats, my poor ears were so sore. So, I’m a brunette again. At least until this cold weather subsides.
I have my first appointment with my new radiologist on Thursday to get that started! Yay!
While life is definitely “in full swing” it does make the countdown to Spring go so quickly! Sunshine and hair, here I come!
Hair Update:
MC and I decided to take a photo of my hair today during nap time. She loves to rub it while she’s falling asleep. (It’s still very fuzzy and soft.) It’s getting thicker everyday. Not bad for 5 weeks after chemo. Mel is ready for me to ditch the wig. Me, not so much. A few more weeks maybe. We’ll see… (Maybe when I ditch the wig, MC will ditch the paci.)
And another interesting chemo fact: My eyebrows have completely fallen out. They waited until after I completed chemo to let go. Apparently, this is pretty typical and I already have tiny hairs growing back where my big, black eyebrows used to be. I think I’ll feel much more comfortable with my super short do once they fill in. (What you see in the photo above is my (no so great) attempt at drawing them in with an eyebrow pencil.)
So can you tell that I started work this week?
While my blogging has definitely taken a back seat this week, I’m happy to say that life is in full swing. I picked up right where I left off at THA with my fabulous schedule of everyday from 8-12. And while I’m certainly much busier, it’s so, so nice to be getting back to “normal.” It helps that I’m able to see my two munchkins during the day whenever I feel like a quick hug or kiss.
Lots to report today…
I’m happy to report that my appointment yesterday with Dr. Sweatman was a great one. He “officially” told me that I had clear margins (from the tumor removal) and the sentinel nodes that were removed were negative for cancer! “Clear margins” (in my unofficial, non-medical explanation) is just another way of saying that enough tissue was removed. Dr. Sweatman not only removed my tumor, but also surrounding tissue, until he felt it was clear of all cancer cells. (The tissue is biopsied for an official report.) Many times, the margins may not be clear, in which case, the surgeon will go back into the body around the tumor site and remove more tissue until clear (i.e. non-cancer) margins (tissue) are found. Thankfully, all was clear with me! Yay! I return to Dr. Sweatman in three weeks, and Dr. Butler, my oncologist, that same week to get the go-ahead for my radiation treatments to begin. (I’ll be able to have radiation treatments closer to my home since they will be every day for 6 weeks, so I’ll have to have an appointment with another oncologist at my radiation hospital, too. Hopefully, it will all take place and get going by the end of February.)
I’m feeling better and better every day, and I think my hair is really growing fast. (Although that makes me even more impatient!) The color is yet to be determined. It still looks much lighter than it was, but I’m thinking it’s just because it’s still very fuzzy. Mel thinks it will be blonde. Maybe he hopes. I’m just bummed I didn’t get a blonde wig. That would’ve been fun. I got the darker wig because I just knew my hair would come back in very dark. Oh well. Maybe I’ll still get one for fun while it grows. We still can’t tell if it will be curly or not. The color of my skin is losing that yellowy, pale cancer look about it and the dark circles under my eyes are slowing going away. (Now, it’s just the usual sleep-deprived, tired mommy, wife-of-Mel circles.) I’m looking forward to a great Spring filled with sunshine, energy and lots of fun…and NO wig or hat or scarves or bald head!
MC finally received her progress report this week. Her report lists many skills in different areas of development. Beside each skill, her teacher marks a check (satisfactory) or a minus (improvement needed). Let’s just say that genetically, both of our girls, are par for the course. Mary Clare excels in oral Language Development, especially vocabulary. As far as the Number Development Section, I’ll just add that she had fewer checks than minuses. And a “skill” under Social Development most definitely inherited from her father, “Shows Self-Confidence” received a whopping three checks. She did great on most of her skills and we are so very proud of her. It’s amazing to see just how far our tiny half-heart, strong spirited little girl has come. She is creative beyond belief and is so full of life and determination. We never have a dull moment with her around! She has an amazing teacher who is filled with spunk, creativity and movement at all times, so I know MC is having a ball in 4K. If there is anything about our youngest born that we all know, is that she does things her very own way, when and where she chooses. So who knows? She may very well know her multiplication facts and is just holding out on us. (wink)
We have a busy weekend of birthday parties, cheerleading games (maybe) and 100-days-of-school-celebrating! That leaves only 80 more early mornings! We are starting the countdown now! Come on Summer, Prestwood Pool is calling our names!
A Day at the Museum
On the very last day of winter break, we decided to take off and head to Columbia to spend the day at the Children’s museum. I ran across these pictures on my iphone yesterday.
And in the news…
(See me in my brunette wig?)
Just like Daddy!
Goodbye Brace Face!
Last week, this girl got her braces off! Forever! She gets fitted for a retainer this week. I’m hoping she’ll be better about wearing the retainer than she is about wearing her glasses!
Lazy Saturday
We slept in this morning and woke up to a rainy day, so after a few episodes of old Hannah Montana re-runs and a bit of karaoke, we broke out the paint brushes. McCanless’s idea, so I let her set it up and help out baby sister. Meanwhile, I tried to get dressed to no avail-PJ’s again for me today. (Shirt sleeves will be the death of me.)
A little secret: We prime over old canvas paintings and paint right over them again and again and again and again. I can’t hang everything they paint-I’d have no wall space!
McCanless decided to make money for summer camp today. She wants to paint and sell her paintings for 5 dollars. At that rate, she’ll be 24 by the time she can afford to go to summer camp. (Wink) I told her that Dad and I would swing the camp tuition again this year if she promised to send a letter home this time! Deal. So, now she’s making money for camp clothes.
She helped baby sister learn how to mix paint to make 20 different shades of pink,
then got busy on her own painting. I only poked my head in a couple of times as she painted. MC didn’t paint long, so her painting isn’t finished. She grew tired after a few pink polka dots and splotches and decided to play with her Barbie house.
McCanless’s final painting is of a Magnolia tree, just like the one in our yard that can be seen through the dining room windows. It amazed me how she remembers what a Magnolia bloom actually looks like. Obviously, our tree has no blooms right now, but she remembered the shape and cones. I love how she made two huge blooms on the tree. She knows proportions and how to paint them correctly, but chose to paint them this way. She paints quickly and doesn’t really put much thought into anything she’s doing. I love watching her. When she runs out of a color, she switches. If she “messes up,” she keeps going, and enhances her “mistake.” She stops and plays with her hair. She doesn’t take it seriously at all. It’s amazing to watch her.
“It’s a magnolia tree mom. I love flowers. So, I made them big.”
If you are wondering…
I should not have looked at the HUGE incision under my arm. It made it hurt worse. (I swear it did.) The “tumor” incision (about 3 inches) isn’t too bad and isn’t very sore, but man, the one under my arm from the lymph node removal is killing me. I have yet to take any meds for the pain, so I guess it’s not THAT bad. And it’s a mile long, I swear. I can’t even see it all. I had no idea that incision would be so long. Sorry, TMI?
Still, I have so much energy and “feel” great. I was telling someone yesterday, I’m so used to feeling down and out after chemo, I was expecting to feel “super-yuck.” It’s just been the norm. But today, although I’m sore, I feel fantastic. So very different, and so wonderful. I think I’ll forever look at illness and “body aches” completely different from now on. I didn’t realize how much chemo really gets you down, mentally and physically.
I’ve got a cute little round pillow permanently tucked beneath my arm. It has helped tremendously. A ladies group creates them for breast cancer patients in Columbia. So nice.
It’s going to be a rainy weekend, and I’m ready to snuggle and have down time with the girls team. I’ve missed their little antics around here for the past two days!
Lumpectomy 101
So, it’s out. My cancer is “unofficially” gone! I should get a call from Dr. Sweatman’s office before my next appointment to give us a full surgical report with details. But as far as I’m concerned, it’s outta here! Surgery wasn’t bad at all, I’ll admit. Mel is required to be with me for the 24 hours following surgery “just in case,” so I’m trying to milk that a bit. (He doesn’t read my blog, so I’m good.) I’ll get up and, “ooh” and “ahh” a bit here and there to get a bit of sympathy from him. I tell you, it’s like pulling teeth. He’s been complaining more than I have. You would have thought he has had surgery. Sympathy pains, he says. He keeps complaining about a “stress ball” in his shoulder.
I don’t think we have ever spent an entire consecutive 24 hours together, so this should be interesting.
Warning: Details below. If you don’t care to read all about the “wonderful details” just skip…
After arriving at the hospital yesterday around lunch time (no food or fluids after midnight) and changing into my precious purple gown and socks (Sorry mom, they made me take off the cupcakes socks you bought me for surgery), I waited for each and everyone of my teams to meet me, greet me and explain to me exactly what was going on.
Mel will never be allowed to accompany me for any other procedure in the future. Ever. As I was getting my first IV, that blew, he was making the most obnoxious faces and joked with the nurse causing me and my nurse to laugh. Laughing. AS a monster needle was being woven into (and apparently out of) my vein. And on a side note, I’ve never had trouble giving blood or getting IVs. Interestingly, the nurse explained that this was yet another side effect of my chemo-“hard to catch” veins. After my second IV was placed successfully, I was given a shot of Heparin in my abdomen. Why couldn’t that have gone into A) the IV that was just placed or B) my port. Take your pick.
What I’ve been dreading most was up next. (I’m giving the nitty gritty here because I had the sweetest email from someone who is just beginning her cancer battle. She mentioned that she loves reading about my experiences. So, for most of you this may be TMI. I just want to put it out there for anyone who may be interested-and for Mel and the off chance that he’ll actually read my blog for once. A few sympathy points. No?)
Mel was asked to step out of the room and two men walked in. Yes, two young men. Exactly who I wanted my “nipple injections” from. In all fairness, they were very professional, respectful and quite funny. Probably not until I made a complete fool of myself joking and giggling and talking a bit too much, too quickly. I’m totally blaming it on my nerves. My first joke was about the Emla cream that I had stacked on my breast. It’s a numbing cream I used about an hour prior to arrival. Mel and I were driving through Columbia and he pulled over into a parking spot for me to lather it on. (Not even a remote, hidden spot. It was across from the Bank of America corporate building on one of the busiest streets in our State Capitol.) He’s so gentlemanly like that. I used the entire tube, so I’m sure the “injection guys” got a kick out of that, a mile high dollop of Emla. After they wiped it off and five injections later, the “site” had to be massaged.
Word of advice: if you are one that is a bit modest, do not get breast cancer.
The injections weren’t bad at all. My injection guys were nice enough to inject two at once. One guy on each side. So, really I had only three sticks. I did have a bit of burning from the “dye” or whatever was in them as it was going in, but nothing too terribly uncomfortable. The thought of it was far worse than the actual process. The dye helped Dr. Sweatman see the lymph nodes and tissue he was removing.
After a stroll down to the OR and a bit of happy juice and gas, I only remember waking up to Mel staring at me again and cracking jokes.
Nitty Gritty over. Begin reading here…
After a couple of hours in recovery, we were all set. I have a bandage on and will keep it on for 48 hours. Steri-strips will wear off after a while and I see Dr. Sweatman in 8 days. I have an appointment with Dr. Butler, my oncologist, in mid-February and will begin the radiation process.
After we left the hospital, I was craving French onion soup, specifically from the Gourmet Shop, my favorite. But it was after lunchtime and the Gourmet Shop was closed. Bummer. So, we headed to Panera. French onion soup isn’t something that is generally “car friendly” so we decided to go in for a “quick” dinner. “Surely, I’ll not see anyone” in my post surgery haze. I even went in bald, my first public outing with my blonde fuzz going on. Not 10 minutes later, two young cutie college girls bebopped over to our table. Whose parents and older siblings I’ve known forever from my hometown. I’m sure I scared them. They were so sweet and polite enough to pretend not to notice.
Mel and I even stopped by the Dairy Queen for a blizzard before returning home. Like chemo, surgery does nothing to my appetite! When we got home, I took my happy pill and dozed off. Today, I’m a bit sore, but haven’t even taken anything for pain, so it’s truly not bad all. Shhh, don’t tell Mel, but I even did laundry this morning.
So, there you have it. Lump is G.O.N.E. Just like that! Cheers! Bring on the radiation. I’m ready!
Photo of my fuzz-hawk on the way to Columbia!
Celebrating my last week three!
Warning: This post is completely about me. I’m “writing it down” so I’ll remember and hopefully be motivated. (or embarrassed)
So, they say when you put it out there, you are held accountable. So, here goes nothing. In honor of my very last week 3 (post chemo), I’m setting a goal. I’m going to try to lose 10 lbs. I know, I know I’m not trying to move mountains or anything, but it’s a start. Contrary to popular belief, chemotherapy doesn’t necessarily cause weight loss; especially the chemo drugs used to combat breast cancer. In fact, my oncology nurse told me that the “going rate” for most of her patients was to gain between 10-15 lbs. I gained one pound for each of my six treatments, and I was a bit over my “ideal weight” even before beginning chemotherapy. So I can’t blame it all on chemo! And with a new year, new start and next week being my first week 4 since September, I’m going for it. Losing weight and eating “better.” I’m a complete sweet junkie and lover of all savory and fatty foods, so this is huge.
I’ve never really tried to lose weight-just kept fit through YMCA classes and keeping busy all the while eating whatever my heart desires-so this is new. A lifetime ago, it seems, I was religious about exercise, but MC threw a little wrench into that lifestyle. Now that her third surgery is over, and my last chemo is over, my body is due a good workout regimen. I have no excuses. (And I can totally tell that I’m inching closer to a lower metabolism as the years pass on-so this is a good thing.) I’ll probably fail royaly, but I’ve already been on my dusty treadmill for the past three days. Yay! I’ve been setting it on a pre-set alternating run/incline walk for thirty minutes. I’ll have to admit, in the past it was never a difficult run for me, but the past three runs have been tough. No pain, no gain. Right? I’ve done them, they just weren’t pretty. At all. On a side note, it’s rather strange to sweat with no hair. I never thought I was a big “sweater” but I can see tiny beads of sweat on my scalp after I run. Weird.
So, I’m joining everybody else in America with my new year’s plan (not resolution, because I never follow through with those) to lose weight and get healthy for 2012. (And probably annoy my mother who complains about all of “those people” who flood the YMCA in January and never show up past February.)
Now if only I can stay away from this site!
Wish me luck!
Go Kittens!
So, when I say I was a little disappointed when McCanless never showed an interest in cheerleading, I’ll have to admit, that was a slight understatement. I “get” how excited all of those “football dads” are when their little tykes show an early interest in a sport they loved as children. I swore I would never try to persuade my children to do anything other than what their own heart desires.
Secretly, however, I would have loved a cute little cheerleader with a big bow! (Little did I realize that both of my children could never, in a million years, be coerced into anything! Certainly not something they had no interest in.) Sure, I asked McCanless if she might like to try cheerleading “like her mommy once did,” but it never worked. And in all fairness, we tried to introduce many other extracurricular activities. Mel was a super athlete, believe it or not, and even took piano. We tried soccer, cheerleading (for a brief, failed stint) and piano. Dance is her thing. Which makes me happy. She loves it. I loved it as a child, and she’s really good at it. (And we have still plenty of time for her to find other interests, maybe even cheerleading one day! Wink.)
Mary Clare is in a little pre-ballet class, but I’m not so certain that dance will be her thing. She loves the costumes and loves to dance. But in her 45 minute class, she spends more time staring at herself in the mirror doing Lady Gaga moves and kissy faces than she spends in first position. I laugh as her classmates just tip toe around her, as she shakes her head and spins a little too quickly, doing her own thing. Certainly not like a little ballerina should. Sure, she’s graceful, but on her own terms. She twirls when she should be still. She kicks when everyone else is plieing; very much how my little spit fire lives life right now.
Recently, when a neighbor asked her if she would like to join a cheerleading team, she squeeled with excitement. (I was secretly thrilled.) So, we bought the pom poms, the uniform, and went to scheduled practices, which were all behind closed doors. The morning of her first game, we were all so excited to see the new “Kitten” cheerleader for the first time. Go Kittens!
She nearly ran over Kaiti, who was in front of her, as she ran down the tunnel of spectators. Do you see how excited this girl is? She was laughing the whole way!
(She insisted on not wearing a shirt under her uniform that morning, along with her pink shoes and leggings. She actually didn’t like the orange uniform and wanted to wear her green Thomas Hart Academy cheerleading uniform, so I didn’t argue with her about the shirt and pink shoes.)
Once the cheerleaders were introduced, they disappeared for the first half of the game and were to come back out at half-time for their performance. At this age, they are only required to cheer for the second half of the game, which turned out to be a good thing, in MC’s case.
When she came running back out on the court, she had changed into her gray leggings and Uggs. Typical MC.
After this photo was taken, the girls assumed position on the sidelines, ready to cheer on the team! Mary Clare loved the gym, the people, the noise. She adored the uniform and pom poms. Cheering for her team? Not so much. She cheered for a few minutes, then wanted a water break, a bathroom break, was mad at me for forgetting her megaphone and eventually sat down until it was her turn to call a cheer. She did stand and cheer for that one. I sat down behind the mini-squad and she sat in my lap and cheered from there for the rest of the game. So, we’ll see if this is her thing or not. Maybe we’ll just keep the uniform for the dress-up trunk. That way she can be a cheerleader whenever she wants, or not. I think I may have an actress on my hands.
Seasons of Change
I’m often amazed my my family. You know, I don’t see myself. Through my eyes, everything is as it should be. I sound the same. I feel the same. My voice is the same.
Over the last five months, however, my girls and Mel have watched my appearance morph into something different. I slowly became someone entirely new. They see me with my bald head, no eyelashes, no eyebrows, and mousy complexion every day. They live with this new person. They’ve become accustomed to seeing me this way. Lately, I’ve grown annoyed with my wig, so it may be soon that I’ll don my bald head outside of our home. Until then, it’s our family’s little secret.
Occasionally, I’ll walk by a mirror and of course, every morning as I jump out of the shower, I notice this new person staring back at me. I’m still not used to it and I quickly move on. As I’ve said before, it’s easy to be bald when you look healthy. It’s so much more difficult when you look sick. I still look sick. I imagine it will be this way for a while. As obvious as my yellow and bruised nails are to the outside world, I can only imagine how the hidden inside of my body looks. Slowly, however, my nails are growing out and health is peeking through. I use this as an indicator of my body. When my nails look fresh and new and healthy, I’m hoping my body will also be that way.
I’m fortunate now that chemo is behind me, I have a new season ahead of me. I dream of warm Spring and a healthy me with new hair and a fresh complexion.
Life is never easy. I’ve had to “suck it up and deal” before, when life seemed so unfair for my baby girl. When it seemed we could finally breathe again, life threw us another curve ball. More sucking it up and more dealing. More growing. More learning.
I have a huge appreciation for my husband. I’m sure 12 years ago, when he spontaneously decided to buy an engagement ring before our graduation trip to Europe(because we all know Mel never plans anything), he never knew all of the trials we would face together. Never once, has he faltered on his extreme dedication to me and our journey. Let’s face it, I’m no pretty sight and I know I’ve not been the easiest person to deal with at times. Mel has treated me just as he has for the past 12 years. Nothing seemed to change in his eyes. (Even when I wanted a little coddling-no such luck.) Every day he has encouraged me and has told me I’m beautiful, even when I know that’s far from reality.
So, even though this season of my life has been challenging, I’m thankful for the growth, compassion, and closeness my family has experienced. Hopefully, the girls have learned that although the outside of me has changed, it didn’t change who I am; and that what is on the inside of a person is far more important that what they see on the outside.
Life is so precious. Seasons come and go and pass quickly. I’m so very fortunate to have had life experiences that make me acutely aware of how amazing our life truly is, right here and right now.
Great Wolf Lodge
After much deliberation over a birthday party…ice skating party, roller skating party, art party, sleep-over party-when, where, how, who-McCanless just couldn’t make up her mind. So we decided for her. It was last week and I wouldn’t have time to plan much of a party anyway. Much to my dismay. (Hate January birthdays.) So, Mel booked a family getaway at the Great Wolf Lodge in Concord, NC.
McCanless went last year with friends for New Year’s Eve and had a blast so we knew she would love it. (Plus, we were curious and wanted in on the action.) Mel threatened my life if I woke them up before 9 AM, and there’s no laundry to do here, so I’m online.
This place is massive and amazing. Amazingly huge. McCanless has had fun showing us “the ropes.” She tells us exactly what to expect and when and where. She already knows everything, you know? Pretty amazing for the ripe old age of 8. (I tell her this about 10 times a day. I can’t wait until she’s a teenager and she really knows everything.)
This girl has not stopped squealing. I think she just might explode from excitement. Not sure if it’s because she can wear her bikini “for real” this weekend or from being almost tall enough to go on big girl slides. (Poor thing. Even though she can swim almost as well as I can, she has to wear the “baby swimmer” bracelet because she is about as tall as a 2 year old. She’s limited to only a few areas of the park, but Daddy has been able to sneak her down a few big girl slides.)
Their favorite, just may be the “kids cave” with bunk beds in our room. I tried to convince Mel that the girls need cute little white bunk beds (specifically from Pottery Barn Kids) because the girls went to bed so effortlessly. (It may have been out of pure exhaustion, but surely the bunk beds helped.)
I was a bit worried about MC being on the top bunk, but I remembered “way back when” my baby brother fell out of his top bunk onto the hardwood floor and rolled under the bottom bunk and continued to sleep. It gave my mom a bit of a nervous breakdown when he couldn’t be found the next day, but he was completely uninjured.
Just as I turned out my lamp, I heard MC sneaking her way to our bed. So much for bunk beds.
Story time in the lobby of the Lodge.
I can’t wait for them to wake up and see what today brings!
Boobs and such
I could jump out of my skin I’m so excited
and cold, but I’ll not dwell on the fact that our house has no heat,
and has been sporadically working, at best, for a couple of weeks now. There have been crews under our house for days upon days. (I’m getting good at redirecting my attention.)
Yes, our “good” luck continues into 2012, but I’m still holding out that this year is going to be fabulous.
At least last week the weather was a gorgeous 70ish degrees.
This week, not so much. BUT Uggs were on sale this week too. Guess who wears Uggs both inside and outside now? We all do!
So, I’ll ignore the cold and announce that we have a surgery date!
I can’t tell you how exciting it was to see Dr. Sweatman and hear that my surgery could be scheduled at any time! Too bad the hospital couldn’t fit me in until January 18th, but I’ll take it! I was literally jumping for joy about the surgery. Who knew?
Also, Dr. S is very pro-lumpectomy and encouraged that route, but gave me the ultimate call of a lumpectomy or mastectomy. (Only after spitting out lots of facts and statistics of more than I ever wanted to know about boobs, cancer and surgery.) Of course, I wanted to do whatever he thought was best, so lumpectomy it is, which is outpatient surgery. The tumor is still there and is “notably smaller.” I wish it would have dissolved all together, but sometimes that’s not the case after chemotherapy. Its what you hope for, but doesn’t always do the trick. It may even be in several pieces, he said. He will remove all tumor and surrounding tissue and do a sentinel node removal. After that I will begin radiation therapy 5 days a week for 6 weeks.
By St. Patrick’s Day, I’ll be a new woman, with two new bathrooms and heat just in time for Spring.
No sweat.
Happy 8th Birthday Lillie McCanless!
Well, it’s official.
I’m old. McCanless is eight. As of 8:51 AM today, to be exact.
I’ll spare you with my sappy “how can she be 8 years old” story. I know every mom feels the exact same when their baby turns yet another year older. But really, how can she be eight already!?
And what’s even harder for me to fathom is the simple fact that she is closer to fifteen than zero. She clearly explained this to me early this morning as I tried to snuggle with her and sing Happy Birthday to her.
“See mom, eight is closer to fifteen than seven is to zero.” Mel math at its finest.
She may be closer to fifteen, but she still loves her silky. After a few snuggles, she jumped up, ready to begin her birthday!
The girls were actually ready when Zara, our friend, neighbor and carpool partner, arrived. We got a Happy Birthday call from Aunt Liz and took a few photos with the yearly birthday blow up.
with song and dance of course.
We’ve been celebrating all week so far. (Doesn’t everyone have birth weeks?) And last night we did what our family does best on birthdays.
Vamos a comer Mexicano! (Senora Denny would be so proud.)
Cheese dip and margaritas for all!
We are quite a bunch, and growing louder each year. If that’s even possible.
And by loud, I mean these two. Yes, Mary Clare that’s exactly what everyone around you felt like, too.
At one point we noticed Bonnie and Clyde arguing over something. When I listened closer, I realized they were trying to “decide” who knew more Spanish. Mary Clare insisted that she did, naturally.
“See, listen to me….Bippity, Bobbity, Boo!”
I missed photos with Nonnie, Bubba and Bapa, and Dopey and Sneezy and Doc. Oops.
Today, she took blue snowflake cupcakes to school. I always let her design her cake and cupcakes for her yearly celebration, and I think that’s more of a bigger deal than presents OR party. She draws up designs all year long. I may have a future cake baker and decorator on my hands. Quite the creative one, she is.
This weekend, we aren’t having a party. We have even bigger plans. Tonight, she decided to celebrate at the Japanese Steakhouse but asked me NOT to tell them it’s her birthday.
“You know, Mom, where they fire up your food and sling it on your plate. We’ll hide Mary Clare’s face, because I know she hates the fire.”
Oh, McCanless, I just love you, my little 8-year-old.
Finally
On December 28, Mel and I headed to SCOA for my 6th and final chemotherapy treatment. Little did I know, just around my last hour of treatment several familiar faces planned to show up to watch me ring the victory bell at SCOA. My treatment lasted a bit longer than usual, as I had yet another reaction to my Taxotere. We closed the place down and although I didn’t have a room full of nurses and patients clapping for me as I rang the bell, I had a few of the most important people in my life there to fill in! It was perfect.
Happened to me
What felt impossible to achieve
I have accomplished
I can do all things through Christ who strengthens me.
Christmas in Ashland 2011
We always spend Christmas evening in Ashland with Mom and Dad and the whole Woodham crew…. Always a crazy, fun time!
For some reason, when we are all together, we always end up outside with a bonfire. We all grab a coat from Mom’s hall closet which must have every coat she and Dad have ever owned from 1970 until today. We love to dress up!
Merry Christmas!
A Christmas Surprise…
Kacy had a special surprise gift for Nonnie this year…
A new baby is on the way!
Sweet baby, I can’t wait to welcome you into this family. You are already one loved little person. You have an amazing family who will love you, laugh with you and teach you all about what family means. (Even if it does get a little crazy sometimes, we do know how to have fun!) Welcome to the Woodham family!
Cheers!
The new Dad and favorite aunt.
I think McCanless liked the sparkling grape juice.
Christmas Day 2011
This girl, who typically sleeps well after 9, was up every hour beginning at 5 am. Finally, she and I crept into the den around 8 and I allowed her to see her big surprise and open her gifts. It was nice to be able to focus on her and have that alone time with her. She took her time and relished in our together time.
And her big Santa surprise…
A Sweet Pea Razor electric scooter!
When this girl finally got up around 9, she was so mesmerized by her 3-foot-tall Barbie Dream Mansion, she barely had time to even go through her stocking! Santa definitely nailed this one! MC is a Barbie girl for sure!
After grits, bacon and cinnamon rolls and a few hours playing Barbie, we headed outside.
Looks like we need another Sweet Pea scooter.
I can’t believe how big McCanless is getting. Such a sweet little lady who adores her baby sister.
I even had a turn on the Sweet Pea, which MC thought was hilarious.
We live in such a great neighborhood (with lots of little girls) so it was fun to visit with many of our neighbors and play with new Christmas gifts!
Merry Christmas!!
Christmas Eve 2011
After a fun morning and yummy lunch at Mimi and Bapa’s house, we headed home for a much needed long winter nap. When the girls awoke, they were filled with such excitement!
We got all dressed up for the Christmas Eve service at our church, but not before one last song!
McCanless had such an ornate, and heavy costume, we waited to get dressed at church!
Both of the girls took part in the Nativity this year during the early Christmas Eve service, typically the children’s service. (One day I’ll make it back to midnight Mass-when Santa makes it easier on me.)
MC was a sweet angel (the star angel, she claimed) and McCanless was Mary. I only got one shot in church because McCanless was actually holding a real live baby. (Thank goodness he was a dear friend’s baby-you know, just in case. I was a little nervous and totally forgot to take photos.) As always it was a very sweet service and so touching to see all of our babies involved. (Except when Mary Clare and Emma nearly brawled over a golden horn as they were hanging over the altar rail.)
After church, we headed over to BB and Papa’s house for dinner. Immediately, “Bonnie and Clyde” got together and hung tight all night long! These two are a mess and love each other dearly.
McCanless and Leah Brenn, our newest cousin! The oldest and youngest Pennington cousin.
Elizabeth, Robert, Kathryn, Michael, Michael, and Nana were there too, but I was a bit slack on photos this year. I soaked up every minute of Christmas and family savoring every moment. What an amazing time of year. So much to be thankful for.
BB and Leah. Fancy Pants for Christmas Eve!
After an amazing day filled with so much love and family, we headed home, said our final goodnight to Elfie, made sure Santa had a few cookies and snuggled into bed with one last Christmas story.
Christmas Eve Morning 2011
Now that Bapa and Mimi are in Hartsville, we were able to spend Christmas Eve with them at their house!! Aunt Liz, Uncle Robert and even Daddy were able to spend the entire morning eating, opening way too many gifts and rocking out!
And of course, it wouldn’t be Christmas without Bapa reading, The Christmas Cookie Sprinkle Snitcher.
MC said today…
After McCanless apologized for something or another, Mary Clare shouted out…
“Sorry is not going to cut it!”
and mumbled to herself…
“unbelievable.”
The Nutcracker
A few weeks ago, Uncle Robert and Aunt Liz treated the girls to a night on the town! They ate dinner at fancy schmancy (and oh so yummy) restaurant, Terra, (which also just so happens to be owned by Uncle Robert’s family-so the girls got extra special VIP treatment) and even had “sparkling wine!”
After dinner, they went to see The Columbia City Ballet’s performance of the Nutcracker. The girls loved the performance and are still leaping and twirling around pretending to be Clara.
…and look who showed up in Columbia the next morning! Thank you Aunt Liz and Uncle Robert for a truly magical night!
Thoughts…
Can you believe it’s Christmas already? I’m behind. Way behind. I always have grandiose plans of building glorious gingerbread houses, making glittery crafts with the girls, magical photos with Santa…the whole she-bang. Some years, I get it together. This year, not so much. I love the hustle and bustle of the season so I’ll try to fit it all in in the next few days.
We did finish our pink and silver spiral glitter sugar cookies. (You didn’t think the girls’ team would have traditional red and green cookies for Santa did you? Do we ever?)
Few days. Yikes.
Three days into Christmas break, and the girls are already in full-on summer sleeping regimen. Up until 10, when I force them to bed, and sleeping in until 9ish or later. Geez. It will take me weeks to get them back into school schedule.
Also, in a few days, I’ll have my very last chemotherapy treatment. That’s also hard to believe.
I know I’ll look back at this time and it will seem to have been just a blurb in my life. I feel the same way about my pregnancy with MC and the three years following. So many days spent in the hospital with her and so many nights worrying. Three open heart surgeries-done. It’s still hard to believe.
I have dreamed twice now that I’ve had hair. It seemed so very real. The first dream, a few weeks ago, I had long flowing locks very similar to what I had pre-chemo. Last night I dreamed it was a darker brown and very short. Sassy. I plan on taking a photo a day (with a new 365 photo app) beginning on January 1. That’s my only new year’s resolution so far-remembering to take the photo. I’m keeping it simple.
So speaking of simple. I was just interrupted by yet another unannounced visit from our plumber. (After his banging on the back door and ringing the bell continuously, I nearly tripped on Emmie running to grab my wig. So annoying-will not miss that.) He simply suggested we not shower or bathe at all in our tub.
Our one and only tub, remember?
He said, “You just may find yourself in the bathroom soaking in the tub one minute and under the house the next.”
Does he realize that Christmas is this weekend and I have crafts to make and houses to ice?
Oh well, I just hope it’s Mel when the tub falls into the floor. Ha.
MC said today…
“Mom, let’s hurry up and go to sleep so sugar plums will dance in our heads!”
My Christmas Star
This girl completely surprised me when, out of the blue, she announced that she was Cinderella in her 2nd-5th grade school musical, A Christmas Cinderella, a few weeks ago. She had to audition for this lead roll and even sang a solo! (She was actually Cinderella #1, out of four, but I’m still proud as punch! She was the youngest little Cinderella.) During my last treatment-week one, she and Mary Clare stayed with Mimi and Bapa. Mimi and Bapa worked with McCanless to help her memorize all of her lines. I didn’t go over them with her even once!
This was during her solo on stage. She has the sweetest little voice.
We couldn’t have been prouder!
In a funk…
Today, I’m in a funk.
Being bald is easy when you look healthy. Being bald is tough when you look sick. I’m tired.
Tired of chemo.
Tired of having bags under my eyes when I’m not tired.
Tired of looking sick.
Tired of being sick.
My skin is yellow.
My eyelashes have gaps.
My eyebrows are almost gone.
When I catch a glimpse of myself passing the hallway mirror, or when I see the round shadow of my head in the light on the wall, I’m still surprised. Shocked. A few weeks ago, I met Mel for lunch. I saw him walk in and thought he saw me immediately. When he walked right past me and asked a server where I was, I realized he didn’t recognize me with my “brunette” bob.
I hate that Mary Clare and McCanless know why I’m bald, understand why I’m bald and are okay with me being bald.
I’m not okay with being bald.
I’m so ready for normal.
I’m so ready to have hair. Eyelashes. Eyebrows.
…
Some are not as fortunate as I. I know this.
It’s just that today,
I’m in a funk.
New Glasses!
I took McCanless to the eye doctor this week for a yearly exam. We came home with these cutie glasses! She failed a vision screening in 5K, which was when I started taking her to the eye doctor yearly. On that visit, I was told her vision would either correct itself or get far worse. Last year, she passed her vision screening with flying colors and got an “okay” visit at the eye doctor. I assumed we were in the clear and her visioin was fine; just like her parents! No such luck, the poor girl couldn’t see. I feel horrible that I waited so long this year to get her to the eye doctor. It’s funny, I can’t see a thing when I put them on. (Far too strong for me.) She does look rather cute in them, though, don’t you think!?
True Story…
Mel and I were actually in the car together alone yesterday for a few minutes. Which happens to be a very rare occurrence. (Before we jumped into the car, he was speaking to a couple who invited him to a non-profit event in January.) As we sat back into the car, he immediately grabbed his phone to tell “her” to schedule the event. (His iphone has a speaking, command-action voice, who will do as she says-funny. He LOVES it. She even calls him, Mayor.)
So he asked “her” to schedule the mid-January event.
Iphone: Sir, the event you have asked me to schedule is occurring on a day with multiple events. Shall I continue?
Mel: Yes.
Iphone: Event scheduled for January 15. Event overlaps with 51 previously scheduled events.
Mel immediately looked up at me. He looked like a kid who just stole a candy. Busted.
He then said, “So that just completely confirms what you already think of me.”
Just have to share…
Go here…
I’m super excited. I recently Googled “hair growth after chemo” and found a plethora of information online; however, one blog stood out. It’s a blog of a cancer survivor who lost her hair, yet documented each week of her hair growth after her chemo treatments ended, aptly named, “Hair Growth After Chemo.” Ironically, her timing is almost one year ahead of me. On November 27, she posted a picture of her new beautiful dark curly locks and I sat and cried at I read her post thinking that could be me in one year or so.
Recently, I’ve become a little self-conscious of my diminishing eye lashes and eye brows. My skin now has a dull yellow hue, as I remember noticing on other chemo patients early on in my treatment at SCOA. I wrote to my new blog friend today and explained that for me bald was easy when I was early in my treatment. I had thick, black eye lashes and eye brows. My skin still glowed of health. (Three of my features I will never complain about again as long as I live.) However, these five chemo rounds have played a toll on my body.
I look sick.
Even when I smile and have great energy, I look sick. It’s disheartening. I so want to look on the outside how I feel on the inside.
This new blog gave me hope that life does go on after chemo. Even now, when I’m still in the thick of it all, with surgery and radiation still ahead of me, I see the light at the end of the tunnel. And my new friend, author of my new favorite blog, whom I will likely never meet or even talk to for that matter has sparked a new found confidence in me.
I’m so close and I know that by this time next year, God willing, I may have a head full of dark waves. I hope so!
So according to MC, it’s Christmas…
So much for the chocolate Advent Calendar.
Sorry, Uncle Robert. Maybe next year she’ll “get it.”
These two make my heart melt.
Can you tell I’m missing my babies? They’ve been at Mimi and Bapa’s house this week as I “come out” of my chemo shell. I can’t wait to be bombarded by, “up to here” with and loved beyond measure by these two. My house is way too quiet. I miss my girls team.
I’m amazed at how different this treatment round has been. I’m not jinxing myself by saying anything more. I may wake up a zombie tomorrow, but for today, I’m good. I even did a bit of Christmas shopping. I was in tears this morning as I told Mel how “good” I felt. (Relative, of course.) It’s always strange to wake up after several chemo days and finally be somewhat normal. I cried this morning because I know that I only have ONE more time to do this. ONE. MORE. TO. GO.
I know that’s getting old. Sorry. I just can’t get over it.
It’s a great day. Tomorrow will be even better. Friday with my girls. Hooray!
Day two after Treatment #5
-So I know the culprit. It’s 7:00 pm, and my friend just stopped by to administer my Nulasta shot. She typically comes in the early morning after my treatment, but tonight just couldn’t make it. I think it may be best this way. (Too bad we only now figured it out.) I’ve been very groggy/sleepy today, but not that painful, excruciating feeling I usually feel. So, I’m assuming that it’s the Nulasta that makes me feel that way. Hopefully, I’ll sleep through a good bit of that and only have a rough two or three days versus my typical four. We shall see. I’m watching Holiday Cupcake Wars on the Food Network and thinking about making cupcakes tonight. By far, very different from my last 4 (day after treatments).
-Yesterday, my chemo nurse submerged my fingertips in ice during my Taxotere. Apparently the ice prevents the drug from getting into the cells and causing further nail damage. She also recommended I go to a skin care clinic. I really feel that my toenails are starting to lift. They are getting pretty bad, but only one more treatment to go, so maybe they will hold on! Another nurse friend of mine suggested that I take Biotin and a B-complex vitamin, so I’m doing all I can at this point.
-Did you know that each chemo treatment is roughly $17,000. That’s $17,000 x 6, plus all of the doctor visits, and extras that are added for chemo only. (Lab work, scans, etc.) And that not so kind little Nulasta shot? Those are $8,000 a pop. Wow, between Mary Clare and me, our household has some pretty expensive cargo! Just an interesting little fact, I thought.
-My Oncologist, Dr. Butler, told me that after my last treatment (December 28), I’ll need wait about 3-4 weeks to get my body back in “order” and we’ll schedule surgery. I’ll meet with Dr. Sweatman, surgeon, soon to discuss options for surgery. He’s very pro-lumpectomy, so I’m hoping for a smooth, less-invasive, easy-recovery surgery.
-And speaking of less invasive. The advantage of having chemotherapy prior to surgery was the possibility of shrinking the cancer tumor. Guess what? It worked! My tumor was originally around 2.5 cm and is now about 1.5! Yay!
-I’ll have to leave my portacath in about a year after my last treatment, “just in case,” so that will be one awesome Christmas present next year! A port-free me with a short new do! (I was also told that my hair will be long enough to have a short and sassy do by then!)
Cheers! One more to go!
The 2011 Hartsville Christmas Tree
Hot chocolate before the Hartsville Christmas tree lighting ceremony
Friends
Lantern wishes
Sweet friends released this lantern and wished for my health in the new year.
I couldn’t help but shed tears as I watched my lantern fly away.
So many wishes. So many prayers spoken on behalf of others.
Hartsville Kicks off the Season!
2011 Hartsville Christmas Parade
Mel and I pulled MC in the wagon again this year in the parade. She was quite a ham, as usual! And…I made it! I was determined to walk the entire parade again this year, and I did it! It was so much fun. I wasn’t even tired at the end! (Ha! Take that chemo!)
After we walked the parade route, we walked back to find our family so we could watch the parade and see McCanless on her Dizzy Dancin’ float.
These two…
When Reese got this hat, MC asked him if he was graduating.
McCanless
Daddy jumped into one of the fire trucks….because he could.
Here comes Santa Claus, Here comes Santa Claus
Santa posed for me!
In a panic!
So I’ve received TWO Christmas cards already.
Yes, you read that correctly, two.
I’m in a panic. I have no idea when, how, where, what to do about our Christmas card. Last year was a total fail. We even had a great family photo to use and I just didn’t do one. At all. I didn’t send a Christmas card.
I haven’t NOT sent a card since Mel and I were married ten years ago! I did not send a Christmas card last year at all. It still makes me GASP!
One of my most favorite things about this season is running to the mail box and finding cards and photos and hellos from friends from all chapters of my life, past and present. I see their families growing and changing and it leaves me feeling connected to them even if I haven’t spoken to them since college. I adore my Christmas cards. I even leave my mantle undecorated, and use my cards as garland. I string them onto twine and add to my garland as Christmas approaches and cards fill my mailbox daily. It’s wonderful!
Last year, this would have been the photo on my card. You know, if I had gotten it together. It’s a photo from Liz and Robert’s wedding.
And we all remember what happens when I put Mel in charge of a Christmas card.
That was never printed or mailed.
We actually had family photos taken back in September specifically for our Christmas card. They are amazing, only now we look entirely different. (Mel and I do anyway.) He’s lost about 30 lbs and I’ve lost hair. We just feel so differently and want to reflect our new selves in our Christmas card. Looking at those photos, we realize we were all in a very different place and time. I don’t know. We’re still thinking.
One thing is for sure, I’ll never leave Mel in charge of a Christmas card.
Chemo bits…
I’m on week 3 before my 5th treatment. I can’t believe it. I’m almost at the finish line. This week is always tough because it’s a countdown to week 1, which has begun to get pretty bad. Doable, but not something I ever want to go through again. Here are a few things going on right now.
-My fingernails are always sore. They are bruised. They have pink/purple splotches on the center of each nail. It looks and feels as if I’ve smashed each of them. I started using tea tree oil every day in hopes that it will salvage them.
-My toenails are yellow. My pinky toenails are deep purple.
-My eyelashes are really beginning to get thin, especially on the bottom. I have large gaps in between lashes and my eyebrows are very thin. I think this is probably harder than losing the hair on my head. I guess I never really thought about losing my eyelashes and eyebrows. It really makes me look sick. I hate that. Even when I feel great, I get asked if I’m, “feeling badly today?”
-I assumed that when my Oncologist told me treatments would snowball, getting worse with each, that he meant it would take longer to recover from each one. They have, in fact, gotten much worse, but I’m always feeling better by the end of week one. It doesn’t take longer to get over, they are just much more intense during that first week. I always tell myself, “I can do anything for one week…I can do anything for one week.” MC is also my inspiration. I can’t imagine how open heart surgery must feel. She’s done it three times. If she can do that, I can certainly make it through this.
-I’m gaining weight. It’s only a couple of pounds, but at least I’m not losing, right?
-My port area has almost become a part of me. I thought the soreness would never end. I thought I’d never get used to the perfect metal circle protruding from my right chest, a constant reminder of my chemo, but it’s something I almost never think of anymore.
-I often wonder if Mel or the girls ever look at me walking around our house with my bald head and secretly wish I had hair. I do so often.
-I know this could be so much worse, and I’m thankful that I am able to get chemo. Some aren’t quite so lucky. So, while I secretly wish for hair, shed tears as I countdown until my last week 1, and just breathe and smile to make it through the day, I also think of how amazing this chapter in my life is, filled with overwhelming love. I am a lucky girl.
One for the swear jar…
It’s ironic how the tiniest things can drive you right over the edge. And looking back, you think of how crazy you were over what?! This has been quite a year for us, and for the most part, I think I’ve held it together pretty well. I try to laugh in the face of turmoil most times, but this weekend, I’m not going to lie, my Christmas tree just about sent me jumping into Black Creek head first.
We had a fantastic Thanksgiving. I, of course, forgot my camera but we had so much fun at my mom and dad’s house this year. It’s been a couple of years since we Woodhams had everyone together for Thanksgiving and as always, we revert back to the days when we all lived under one roof. It’s pure chaos. Loud, obnoxious, wonderful chaos. We laugh, sing and dance and make fun of each other. My cheeks hurt on Thursday night as I lie in bed thinking of all the fun we had and laughs we shared. And of course, they made fun of MC’s Rudolph nose.
Let me back up…On Wednesday as I was busy in my kitchen baking, I realized MC had dirt on her legs and feet from playing in the yard that morning and her face was quite dirty. She was using her stool to wash her hands at the sink. (MC is the human tornado destroying everything in her path most days, if you didn’t already know that and I was desperate to try to finish my Thanksgiving baking.) I had a brilliant idea. I scrubbed down my kitchen sink and filled it to the brim with bubbles and tea cups and plopped her right in. Just like old times. She still fit!! I could still do my baking, keep my eyes on her and she would be contained occupied.
Today, three days later she still has a huge deep red scab on her entire nose. Rudolph. We ended up at the pediatrician’s office about 30 minutes after that sink bath. Apparently, she used a Mr. Clean Magic Eraser pad (which I thought was way out of her reach) to “wash” her nose and ended up nearly scrubbing her skin off.
So today, my Christmas tree has been decorated, undecorated (realizing a bit too late that we have 100 sets of faulty lights) and my house looks like the day AFTER Christmas from a certain little tornado and I’m feeling like Mother of the Year.
I’m sure if you are reading my blog, you have seen other mom blogs. I have. Some have homeschooling moms with five kids all of which, are living and working on farms. Other blogs are written by moms, again with a slew of kids, who volunteer all over the country speaking to teens about Christianity, all the while having craft hour daily with their beautifully dressed, all-A children and photography businesses on the side. You know the ones. Perfection at it’s peak.
I get it. They would rather showcase the happy times. Me too. But sometimes life just sucks. (That’s one for the swear jar, mom. Sorry.)
And as I sit here this morning with scattered ornaments, beads and lights all over the den floor contemplating throwing my Christmas tree out onto the street and into the leaf pile pick up and staring all over, I just realized that this is what life is about. It’s truly what makes us appreciate those times that do go smoothly. Those big ceramic lights of mine have worked for years and years and although they are now considered a “fire hazard” and can no longer be found anywhere, we enjoyed them tremendously while they lasted.
Funny how madly passionate you can be about something once you realize it’s gone.
Today, I’m thankful for non-working Christmas tree lights, crazy mishaps that only seem to happen to my girls, trips and falls and bumps in the road. I’m thankful for those times that don’t go according to my plan because those are the moments when I stop and think of all of those wonderful moments that do.
A little shout out…
Can you tell I’m feeling better? As soon as I start to “come back” as I explained to Mel last night, I try to pack in as much as I can, including blog posts. Yay! I’m back. Whew, last week was rough, but I’ll not focus on that. I wanted to give a little shout out to my hubby’s apparel company. He’s so super busy with being mayor, funeral director, firefighter, daddy, husband extraordinaire, that I oftentimes forget that he still has Pennington & Bailes Co.?! Last week, Kimberly Whitman, of Southern Living featured P&B during a tailgate segment on the Today Show with Hoda and Kathie Lee! I completely missed it!
P.S. Mimi, Nonnie and BB, click on the red words (links) to see the websites and video segment from the Today Show!
Beefalo and sunshine
I love age four and Mary Clare is in it’s prime. She’s at a point where she is completely confident in herself and her vocabulary and I love asking her to tell me stories. Today, for example, she was explaining to me that she wants to be a cooker (chef). When I asked what her favorite food is, she, much to my surprise, replied, “bacon.” (Totally out of the blue. Never saw that one coming-she’s practically a vegetarian.) After a conversation about how she cooks bacon, I inquired what she would cook McCanless if given an opportunity.
“Well, duh. Beefalo,” with a slight roll of her eyes.
I nearly choked. I had no idea if she meant Chef Boyardee Beefaroni, which I swear they’ve only had once in their lives, or Buffalo, as in wings maybe? which we rarely have. I know I have certainly never cooked Buffalo for them. She may have very well meant beef, as in hamburger, but she was certainly confident in her word choice of beefalo and only stared at me completely aggravated, as I tried desperately to stifle my laughter.
Today, Nonnie, the girls and I spent a wonderful fall day at Blizzard Branch Cane Syrup farm? barn? Not really sure what to call it. (I guess I shouldn’t be so critical of Mary Clare’s word choice.) We watched how cane syrup is made “the old fashioned way.” It was quite remarkable. As we enjoyed a wonderful lunch full of all things southern, including vegetable soup, and fried pig skins, (yes, my mom munched on them and was even able to get McCanless to try them) Mary Clare exclaimed, “LOOK mom, there’s a sunshine in your pickle!”
My heart nearly melted as I realized she was referring to the sliced okra in my vegetable soup.
If only we could all find sunshines in pickles so easily.
Hello Coffee!
This morning I enjoyed my coffee.
One of my most favorite times of the day is in the early hours of the morning. Not only because it just may be the only moment of silence or alone time I’ll get all day, but because for a few moments everything is perfect. While the girls and Mel are sleeping, safe, healthy, the world goes on. Everything is starting fresh. New.
I’m always the first to rise, taking Emmie out for a little walk around the yard. Summer mornings, I spend waving to neighbors as they jog by or hustle to work. In cooler months, I bundle up and sit on the porch and watch the Canadian geese dance, while I enjoy my coffee.
During week one of treatment, nothing is as it should be. Even my taste buds turn on me. My mornings with Emmie on the porch aren’t quite as enjoyable. In fact, I skip the coffee all together.
Today, I enjoyed my coffee on the porch with Emmie.
Today, I know that this time is evanescent.
Grandparent’s Day at THA 2011
McCanless and Mary Clare, once again, weren’t lacking in the grandparent department on Grandparent’s Day this year. They are two lucky girls! BB, Papa, Nonnie, BaPa and Mimi were all there to celebrate!
First up was a musical selection by all K-classes. Can you see my little Turkey? (Second from left) They all sang their little hearts out, yet McCanless found it far more entertaining to wave and sing to her big sister and all of the big kids sitting on the front row instead.
This was just before they all sweetly joined hands and proceeded to circle the stage hand-in-hand, except one tripped and they all avalanched, falling down and knocking one poor boy down the stage steps. I was laughing too hard to get a photo. Wish I would have had my video on!
Some of Mary Clare’s work in her classroom…
“Mary’s” turkey. My little one has a completely different personality from my McCanless and this painting just may sum it all up. Completely on her own terms, never in the lines, never intentional, never patient, fearless, passionate, colorful is my youngest.
This just made me laugh. It’s a self-portrait collage. Notice the passy.
Grandmothers extraordinaire, my mom, “Nonnie” and one of her BFF’s, “Khaki,” also a THA grandparent.
McCanless made this for Mel’s grandmother, her great-grandmother, “NaNa.” We don’t see her that often as she is now in an assisted living community, but I was so very happy that McCanless thought of her and made this for her. I’m so glad she will have the memories of a great-grandmother.
Happy Grandparent’s Day!
Chemo Treatment 4-Movin’ On UP
Day 2-I have not updated my chemo journey in a while because of my naivety. I assumed at the start of all of this, once I documented daily during Treatment One that all subsequent treatments would follow the same path. Little did I realize, although I was told specifically by my nurse, that each treatment would snowball, each becoming increasingly more difficult.
After treatment 2, where I had a severe reaction to Taxotere, a chemo drug, I thought that round was rough simply because of the reaction. Once they put me on steroids, they woudn’t be quite so bad. Wrong assumption again. Treatment 3 was, by far the most difficult. Maybe because I was alone, as I had to ship the girls out for the week with willing grands and chauffeurs, and Mel was on a business trip in Chicago. I really had nothing to focus my mind on other than feeling terrible. So, I’m going to play naive again this week and hope that because I’ll be keeping my babies at home and Mel is at least a phone call away, it will be smoother. (I know I’m kidding myself, but it’s what I’m banking on for now.)
My treatment yesterday went smoothly. No reaction, (although today I look like a sunburned chipmunk thanks to the steroids.) Kacy stopped by SCOA and after my treatment, we all went out to eat for an early dinner. Mel wanted to do a bit of shopping for the funeral home and I even lasted through that. (Mel only gets out to “real stores” once in a while, so when we hit up Target, World Market and Bed Bath and Beyond, he was way too consumed. He thought we needed anything and everything he saw. I’ve got get him out more.)
Today, I’m tired. I’m taking it easy. My friend (and nurse), April stopped by to give me that blasted Nulasta shot, which makes my body get better, but makes me feel like the Wicked witch of the West with a house dumped right on top of me. My saving grace is that by Friday, I’ll be back to normal (hoping) and I’ll have two weeks of great days! Then, drumroll please……..only two more treatments to go!
Durell, my favorite check-in guy at SCOA, with his deep Barry White voice, scheduled my dates for December.
Treatment 5 on December 5 then my final treatment on December 28! So, I have a date. I’ll be ringing that bell before the new year begins! Yay!
Columbia Marrionette Theatre-Field Trip for McCanless
Last Friday, I was able to go with McCanless to the Columbia Marionette Theatre! It was amazing!
Of course, McCanless probably liked hanging out with her pals outside of school more than anything.
But not surprisingly, she did get a kick out of playing with the puppets! She loves the theater and was enthralled with the marionette puppets.
While the dancer was away, Mommy and Clare went to play!
We went to Disney on Ice!
After finally finding our seats, and after purchasing much NEEDED items like a tub of Micky popcorn, Cinderella flash light, Beauty and the Beast tea cup with rainow icy, we were set. And after all of that, she sat mesmerized throughout the entire show, not touching the popcorn or icy. Who knew?
We had a ball! (But shhh, don’t tell McCanless!)
Everybody JUMP!
McCanless is in Greenville with Kacy and Nonnie this weekend at JUMP!, a dance convention. While there, her petite dance team also competed. Kacy just sent me this photo of my little angel in her costume all dolled up. That’s a mask, by the way. I was able to watch her dance tonight live via webcast and I couldn’t be more thrilled for her! She danced her little heart out and did so well. Way to go, my beautiful little dancer! Not bad, Kacy. (My fill-in stage mom!)
JUMP! Day one with Eliza, McCanless and Jennie.
You know you’ve made it big when…
you become a Halloween costume. Way to go, Mel!
(Great costume, Casey!)
Whales and Krill and projects, Oh My!
McCanless has a Science paper and project due next week, and she couldn’t be more thrilled. She was able to choose any animal in the entire world and after much deliberation, Google searches and mind changes, she has chosen to not only focus on one of the largest animals in the world, but also one of the smallest, the Blue Whale and Krill. They go hand in hand, so I thought it was a great idea. She only searched marine animals, which I found interesting. She has always loved the water and the ocean, but I didn’t realize it would filter down to the wildlife as well. I just knew she would choose a dainty poodle or fluffy Persian cat.
She loves art, so after listening to her talk of cutting out photos and plastering them on a poster, which is the norm for a school project, I’m afraid, I suggested she paint her animals on a canvas. She jumped at the idea! (I’m trying to stay out of this project as much as possible, but also “guide” her just a wee bit.)
I couldn’t help but get super excited as I saw her rules and guidelines for the second portion of the project! I could easily take over! BUT, I’ll NOT! She is in the early paper writing stage, having to submit a “Sloppy Copy” first, and an edited one last. I completely jumped into teacher mode and began to explain everything about submitting drafts, and MLA format, etc., etc….until I realized she was looking at me wide-eyed and like I was crazy.
So we focused on the canvas for now.
After we talked about deeper water means deeper colors, and blending colors, I left her with her blue paints and her canvas.
Once she finished the ocean, I decided to send her to Mel for the details. McCanless is showing me Daddy’s whale here. I think she was pretty impressed with his drawing.
I can watercolor and blend and “fake” paint, and I’m also an ace at painting “cheerleader” letters, thanks to high school, but a little known fact about Mel is he is quite the artist. He’s very detailed and very talented, I must say. I wish he had time to devote to creating art. He taught McCanless how to draw a whale using shapes.
Mel’s drawing is on top and hers is the larger whale under his. I asked Mel if he “helped” her because I thought it was a pretty nice drawing, especially for her first attempt. He said he didn’t need to help her at all, she did it all on her own, quite easily. Tomorrow, she’ll paint her whale and krill on the canvas. I’m so proud of this sweet little 2nd grader and all that she is learning!
I am the left brain.
I am a scientist. A mathematician.
I love the familiar. I categorize. I am accurate. Linear.
Analytical. Strategic. I am practical.
Always in control. A master of words and language.
Realistic. I calculate equations play with numbers.
I am order. I am logic.
I know exactly who I am.
I am the right brain.
I am creativity. A free spirit. I am passion.
Yearning. Sensuality. I am the sound of roaring laughter.
I am taste. The feeling of sand beneath bare feet.
I am movement. Vivid colors.
I am the urge to paint on an empty canvas.
I am boundless imagination. Art. Poetry. I sense. I feel.
I am everything I wanted to be.
Today
Today, I took the girls to school at 8.
I got a call to go get MC at 9.
Plumber came at 10.
Mel nearly fainted at 1.
My straw busted through the bottom of my Sonic cup around 3. In the car.
I noticed my tire was flat at 6.
MC is fine. Right now as I sit to take in exactly what our plumber explained, and hoping I’m being punk’d, she’s “crazy dancing” in front of the television watching Yo Gabba Gabba. She took a two hour nap and after a good bit of one-on-one mommy time, she’s fine. The house, not so much. My tire, not so much.
After finding 6 inches of water sitting under the back half of the house, the plumber further explained that our entire plumbing system needs to be replaced. In fact, he mentioned seeing “rice” under the house.
That’s odd.
“Well, I did just use the disposal to rid of a bit of spaghetti noodles.”
Yes, I know. Pretty gross.
Oh, and the tub is about fall through the house.
And the 6 inches of water sitting under the house? Yup, it’s dishwasher junk, garbage disposal junk, tub water, washing machine water all rolled into one. The only pipe that actually works is the one coming from the toilet. Can that be a silver lining?
The bathroom needs to be ripped out and replaced. The bathroom. The one and only bathroom in my sweet little 80-year-old Creek House.
This is about the time where Mel nearly fainted.
That was yesterday.
And this morning. After yesterday’s chaos, guess what? McCanless rolled down the car window just before walking into school. It stuck. All the way down. It won’t budge. At all. So, it’s November and I have a window down.
Lovely.
I’m definitely buying a lottery ticket this time.
REVISED November 4: You know that window I mentioned? The one that’s stuck down?
It rained last night.
Happy Halloween 2011
Our first (and only) trick-or-treater of the night, Stella, was Olivia, the Pig!!
My sweet Rapunzel
Around 6 pm, much to my dismay (but no huge surprise) McCanless opted not to wear the Cha Cha dancer costume that she HAD to have a month ago. Sigh. It’s what my girls do. Every year. I had already spent the better part of the day convincing Mary Clare to wear her new Rapunzel costume instead of an old pirate costume of McCanless’s, so I didn’t have the energy to do it all over again. I think she was a dancer, model, teenager-wannabe.
I found this pink wig in the girls’ dress up trunk. I think it was from when McCanless was obsessed with the Doodle Bops forever ago. It needed a bit of taming and brushing, but I made it work! I’m not a big fan of bangs, but I do like the pink. I may have to wear it again!
First stop… BB and Papa’s house just around the corner. Cousins, Leah Brenn and Reese were there, too!
McCanless insisted on stopping by her friend Zara’s house next. Zara is a classmate of hers and just recently moved to the end of our street! Filled to the brim with candy and uber excitement, they immediately insisted on trick-or-treating together. Zara’s mom braved the infamous College Avenue trick-or-treating hot spot with the pair, while Daddy and I stayed on our own street with Rapunzel.
Happy Halloween!
THA Halloween Carnival 2011
Here’s my Cha Cha Dancer at school with her spooky and (not-so-spooky) pals on Friday!
Today marks a very special occasion…
Apparently, I’ve passed down not only my sweet tooth to my girls, but my “cupcake gene” as well. I can honestly say we have cupcakes at the very least, once a month. We’ve made all kinds for all occasions, but prefer the usual white cake, with white vanilla icing on a “just because” day. I’ve made completely scratch-made cupcakes and icing, but when you can doctor up a box mix and tub frosting with yummy results, why not? We stick to simple, which ironically ends up anything but. Our main focus and delight in baking cupcakes, comes with the decorating and eating. McCanless, in particular has a knack for ideas and has definitely inherited her sweet eating skills from Mommy.
Halloween Cupcakes in 2005
4th of July star cupcakes at the beach in 2006
Always yummy!
4K Back to School cupcakes
Always in charge of stirring and cracking eggs!
5K Piggy cupcakes for Ms. Susie, who loved pigs!
McCanless even had a cupcake decorating party for her 5th birthday!
And today, McCanless mixed, baked and decorated an entire batch of cupcakes all on her own, with absolutely no help from me! I always keep the kitchen stocked with cupcake essentials, and I heard her rummaging around for a while before I inquired. I took a quick peek and let her be. (Besides, Mary Clare was napping and I was enjoying the quiet time.) When I went back into the kitchen to check, long after I heard the stove timer, McCanless proudly showed me her very first batch of cupcakes completed entirely on her own from start to finish. I’m so proud.
She made Funfetti cake with vanilla icing and Halloween sprinkles
She ran out of vanilla, and switched to chocolate icing and added googly eyes.
Cha Cha Cha
Do you know how it is when you are so very sick, maybe sick with flu and fever, and it seems you couldn’t possibly feel worse, you break into a cold sweat, ache a bit longer and suddenly, it’s all over? My chemo week one is quite that way. I have never experienced anything so excruciating. I’d like to say I’m a tough cookie, but chemo brings me to my knees, literally. So today, I’m breathing a deep sigh of relief.
Last night was my breaking point, and I think (dare, I say?) I’m over the worst part of week one. Each week gets more and more intense and adds a day or two of pain and I’m reminded of how serious this cancer deal is. I never thought it would be a walk in the park, but I’m determined now more than ever to continue on and fight these side effects every step of the way no matter how long they keep me down.
So, I’m back and today, I’m heading to THA for the Halloween Carnival. The girls were allowed to wear their costumes to school and it had to be the easiest morning ever! Check out this little sneak peak Halloween preview…
Long gone are the days of matching or even coordinating costumes. These two certainly have minds of their own!
Yes, I choose to smile.
I know I smile a lot. Often others tell me to let my true feelings out, not to hide under my big smile. They “worry.” And maybe I am masking fear, anxiety, but isn’t it my choice to carry on how I know? I hate making others uncomfortable. I really don’t think it’s about me and hiding my feelings, it’s a little about protecting others. So, I smile.
I will smile. It’s what I do. Even when tears are streaming over something as trivial as a cheesy Hallmark commercial, or I’m at my wits end with the girls about to explode in anger, or even sitting quietly at MUSC holding my baby’s hand as she lay on a table solely supported by tubes and machines, I smile. It’s what gets me through. It is what has made me get to this point in life, without falling to pieces. A smile is my promise of hope to myself and anyone else who notices.
Sure, I have my days of feeling completely defeated and I sob. I sob to my husband, to my God. I think everyone has to let it all out at some point. But, I feel better when I smile.
“You never know how strong you are until being strong is the only choice you have” -author unknown.
So true.
I’m not strong. I do what I have to do to carry on because I don’t have a choice. If I did, my youngest daughter would have a perfect heart and a perfect brain. I would have hair, not cancer. McCanless would not have had to grow up so quickly learning way too much about how fragile life is. Mel would have hair. (Wink) But life is life and so much about life is amazing. I choose to focus on those wonderful days. I choose to smile and remember those wonderful days, not dwell in the hardships.
Although, those hardships do make us that much more passionate, and make us hold on to what truly matters most.
So isn’t that something so smile about?
Halfway there…
Chemotherapy Treatment #3 Done! Three more to go!
This is Angela, from Lucky Duck. Her chemotherapy journey ended just as I was beginning mine. Angela was at SCOA today for radiation and stopped by our chemo party for a bit. She has been such an inspiration to me as she is a mother of two young girls (one-year-old twins!) and a teacher and is winning her fight with breast cancer. Today was the first day we met in person despite the countless emails and texts we have sent to one another. I can’t tell you how amazing it has been to be able read her blog and know what’s ahead. I’m so happy to have my new (and bald) friend!
Art
Yesterday, the girls had a day off from school and wanted to spend the entire day outside. To coerce them into coming back inside (I desperately needed to do laundry), I offered a painting project. I usually give them a canvas and let them have at it. Today, I decided to put my “teacher skills” to work and I gave them a specific assignment. At one point, Mary Clare told me I was “acting like Ms. Chure!”
First, we had to find inspiration. I asked the girls to gather a few fallen leaves.
Being the water creatures that they are, they headed straight to the dock, gathering all sorts of lily pads.
Which to my surprise, were also changing colors.
Our little creek house
After a little walk around our house, we had all the leaves we needed.
Mary Clare’s finished painting with her inspiration
McCanless’s finished painting and inspiration
I was quite pleased with both of their work, given that I only asked them to use the leaf as a starting point. I didn’t help at all with either one of their paintings. I guess they are both at a very literal stage of development and chose to draw and paint their exact leaf. Still, I think they both did pretty well with their drawings and colors. Love my little artists!
MC’s Jack-O-lantern
I didn’t get any photos of the actual process, but we decided to carve Mary Clare’s pumpkin yesterday. She surprised me by not wanting anything to do with the “insides” of the pumpkin this year. She let McCanless handle the scooping, while she told me exactly what to carve and how to carve it. “One tooth here, and one there…triangle eye here and there…and no nose.” I did exactly as she told me and her little pumpkin turned out pretty cute. (By the way, although her smile is similar to that of her own jack-o-lantern missing a few teeth up front, she isn’t missing any in the back nor does she have fillings. It looks like someone had a Hershey kiss or two just before I snapped these photos.)
So ready and so not ready ramblings…
Although, today is a fantastic day, as I’m feeling wonderful, the dread of next week is looming. I keep telling myself, it’s treatment 3 and that’s half way there.
I’m half-way there.
But I just can’t shake that feeling of a constant countdown. Today, tomorrow, Saturday, Sunday.
My life is now lived in weeks. Week 1 is horrible, week 2 is better and in week 3, my energy level is best, so I try to pack in as much as I can because the countdown is on. You see, it’s never out of my mind. My great days on chemo are still far from my normal days not on chemo.
I catch glimpses of my round head in shadows at night, passing the mirror in the dining room, or in my car’s rear-view mirror. I’ve grown tired of “hiding” my head and I often leave it exposed. It’s just a nuisance to keep it covered at all times. If I do cover it, I’m typically in a hat. I’m not sure if I’ll ever get used to it. I’ve accepted it, embraced it, even, but it’s still something so unnatural to me.
I wondered last night if Mary Clare will even remember my hair. Even after chemo, my nurse explained, your hair begins to grow very slowly. So, I imagine it will be years before I have longer hair again. I may never have long hair again. I loved my short do. Time will tell. Mary Clare told her teacher that she was angry with her daddy because he shaved my head. Then I saw an art project she created with a portrait of me. Her teacher wrote her quote, “My beautiful bald mom.” My hope is that she and McCanless are learning from this experience, too. Hopefully learning tolerance, acceptance and compassion.
I’ve prepared for next week in terms of schedules-Mel has a conference in Chicago, so I’m flying solo all week. I’ve planned a chemo party with a few friends on Monday morning who are kind enough to get me there and home. I’ve rationed out the girls and made dance, school, lunch, doctor visits, med checklists. I’m ready, but I’m so not ready.
Regardless, it’s here.
But.
I’m half-way there.
Girls on the Go!
Uncle Liz and Aunt Robert, as Reese likes to say, braved the SC State Fair once again this year with the Pennington cousins.
Uncle Robert Sandwich with twin cousins, MC and Reese
Get your motor runnin’!
Is that my baby up there? Waaaaay up there?
Of course, Liz and Robert did not disappoint! As usual, the kids were filled to the brim with sugar and soaked in dirt, sweat, and fair grime. They brought home the biggest, best fair toys ever and were utterly exhausted Saturday night! Thank you Aunt Liz and Uncle Robert for being so super fun and spoiling us rotten! We love you!
McCanless even took her 12 foot prize snake to school today. She insisted, as they are studying reptiles. (You’re welcome, Ms. Jenner.)
What we’ve been up to…
I’ve been feeling great lately. (Well, in relative terms of being on chemo-great.) I, once again, overdid it this weekend. Once I start feeling “normal” after treatment, I get excited and do all things “normal.”
After a few days of that, I crash. This Sunday, after church and lunch, I crashed. Hard. A 2 hour nap and bedtime at 8:00 pm and I’m still tired today, but it was totally worth it.
We had a great week filled with birthday parties, dinner with old teacher pals, the State Fair, Oktoberfest and yard work. (The girls went to the State Fair on Saturday with Aunt Liz and Uncle Robert while Mel and I went to Oktoberfest in downtown Hartsville, all the while Nonnie, Bubba, BB and Papa did some serious work in our yard including constructing a walkway…yes, without us there. Yes, I know. How amazing is our family?)
Last week was also spirit week at THA and I was able to take a minute to snap a few photos of the girls one morning. It was Tacky Day. (Actually, it was “Class Day,” in which each class was able to choose what they wanted to wear. Second grade voted on Tacky Day. McCanless dressed tacky, so little sister had to dress tacky, even though it was NOT Tacky Day in 4K. Oh well, I think they look more cute than tacky anyway!
Think they like to pose?
Take a deep breath, and count to four…
Lillie McCanless, age 4, with a black eye and stitches and chopped hair after using safety scissors to trim it herself.
Mary Clare Blaylock, age 4, missing two teeth after diving down a flight of stairs
I think age four is THE most difficult age. Obviously, my girls have had their fair share of bumps and bruises during this stage, but it’s the “new found” independence and confidence of this age that really gets them going. The super sassy mouths, determined spirit overload, control wars (not that I have any), extreme hardheadedness. I remember it well with McCanless and I’m there again. (Not that McCanless got over it all by any means; it just seems to have subsided a wee bit.)
(I realize that once McCanless hits, say 13, I’ll look back at this and laugh at my naivety.)
Although they look nothing alike at age four, I can assure you, that both of these two have given me more laughs, tears, and moments of pure exhaustion, panic, fear, humiliation, extreme anger and utter frustration in their fourth year of life than I’ve ever experienced in all of my life.
Which makes me love them that much more.
Funny, how that works.
Shhhh
So, it’s really no big secret. I don’t have hair. I decided to shave it off before chemotherapy had a chance to take it all from me. It was a decision I’m so happy to have made. It was an empowering one. Besides, I’d rather look like G.I. Jane, than a hairless chihuahua with wispy clumps, which was exactly the direction my head was headed. Just not a great look for me, I’m afraid.
It was an experience that will never leave me, the four of us crowded into our bathroom shaving mommy’s head. Mel and McCanless taking turns with the buzzer. MC dancing around the sink in and out of the bathroom, not really paying attention or caring that mommy’s head was slowly becoming bare. I know it helped our family transition, me more than anyone, into full “cancer mode.” It made it very real and the four of us entered together. Mel and I have certainly had our fair share of life altering experiences and this, albeit a quite unique one, changed us both and brought us even closer.
So, I’m bald. There’s not really anything I can do about it. I don’t have a choice, so I embrace it with my dark brunette wig, scarves, hats, nothing. Who knew? I’ve had long hair forever and thought this would be one of the more difficult obstacles to overcome. I’m actually pretty comfortable with a bald head. I think I have shocked a few friends who come to the door unannounced to say hello, however. (This is your warning!)
I’ve surprised myself.
But.
I’m not strong, as some have mentioned. I had a complete stranger, now friend, who emailed me with a photo explaining that she cut her beautiful 12 inch ponytail to donate to “Beautiful Lengths” after reading my blog. She’s a strong one. She made a decision based on what she knew was a wonderful thing to do. She had a choice. My hair was falling out by the fistfuls. Inevitable. I had to cut my hair.
I’ll admit, I would have never donated my ponytail prior to August 3.
But, I’ve done many things I never would have prior to my diagnosis.
I’ve shaved my head.
I’ve made a point to explain to Mel where I keep McCanless’s snack bags and where Mary Clare’s tiny ponytail bands are hidden.
I’ve hugged my girls more and lingered longer with them in the mornings before school, and at night not worrying about tardies or bedtimes.
I’ve thought about how much I love my house, rather than wish it to have just one more closet or one more room.
I’ve taught my four and seven year old girls what cancer means.
I’ve learned how intensely loyal Emmie is.
I’ve worn hats and scarves and wigs.
So although two months ago, I would have not chosen to have a bald head and everything that goes along with it, I’m thankful for the surprise lessons of humility, tolerance and appreciation it has taught me. And today, it’s no secret that I’m bald.
But, I love my bald head.
Columbia Bound
The girls spent the weekend in Columbia with Kacy and William,
and to say they had a wonderful time is a complete understatement!
They are still talking about how much fun they had!
Eating
Cooking
Smiling
So much fun! We love you Kacy and William!
Mary Clare’s 4K Trip to the Pumpkin Patch
Last week, Mary Clare’s class loaded up and visited McLeod Farm’s Pumpkin patch. (Luckily, my girls have a plethora of aunts moms to fill in for me when I’m not up to par these days.) Kacy was kind enough to take a day off of teaching her own class of first graders in Columbia, drive all the way to Hartsville early in the morning and accompany another class full of 4-year-olds on a farm. Lifesaver.
I could eat her up, this little mess of mine.
She was a little excited. Can you tell?
These three.
Spooky faces
And the absolute BEST part of the day….riding on the bus!
When Kacy headed back to Columbia that afternoon, she had some extra baggage. She took the girls with her for the weekend!
Second Grade
Second grade at THA has recently been discussing animals in various habitats and how they “camouflage” to protect themselves, among many other interesting scientific tidbits McCanless loves to share with me on a daily basis. (Yesterday, I heard all about a story of three whales who failed to migrate. The story of their survival and rescue lasted all the way home, throughout homework and didn’t stop until dance class. Then I heard it yet again over dinner when Daddy came home.)
On Friday, they planned a “field trip” to the woods to explore and were allowed to wear camo that day. McCanless was thrilled, but we had to venture to the Army Navy store in town to purchase camo. (A first for the girls’ team.) And you know McCanless… we had to buy the shirt, pants and hat.
I’m thrilled that she loves school and is so happy, my big second grader.
Sweet Girls
Today, while McCanless was at dance,
Mary Clare and I got busy in the kitchen…
Candy Corn Brownies for 4K!
(I know Ms. Chure will be thrilled…sugar for her four-year-olds!)
Of course, when McCanless got home she had to bake a pan for her own class,
so we got dirty busy again.
McCanless wasn’t quite as precise as Mary Clare with her batter pouring skills.
She’s a “more is more” kinda girl.
(Yes, we switched spoons!)
“Today is a fun day. It is a great day. I’m glad you are here. God made today a great day.” Mary Clare
Mary Clare and McCanless are spending the weekend with Aunt Kacy and Uncle William in Columbia. They’ve had a wonderful weekend so far. I can’t wait to see pictures and hear of all of their fun. After a long week, this quote, which Kacy just texted me, makes me smile and know that everything is going to be just fine.
Blowing Bubbles
April 2011 at MUSC. I can’t get this image out of my mind. I’ve never posted it, yet it is burned into my memory and holds such significance now.
Mary Clare found happiness amidst pain and looked beyond the immediate. She is what keeps me going.
Kisses
How is it that the joys and anguishes of life so often collide? When we suddenly smile and laugh through swollen eyes and falling tears. When a rainbow peeks out from behind a black tumultuous cloud. When we know that letting go of something so difficult to release is best and trust in what lies ahead.
This week has been a very difficult one for me. Pain, guilt, bitterness. Sadness from all that I am unable to do. Letting go of control.
All are tribulations we face daily. Not just me.
I’m forcing myself to focus on the glimmer of small kisses thrown my way throughout the day. Mary Clare snuggled with me in bed this morning and rubbed my shaven and very stubbly head, as if that’s the way it should be. A friend dropped off a warm Pumpkin Spice Latte early this chilly morning. Mel made a quick detour home to kiss me and tuck me in for a late morning nap. I just received a super exciting phone call about our family that sent sunshine straight through my soul!
This season may be filled with pain and tears, but aren’t they all? I guess as long as we search for and hold onto those small kisses, we truly appreciate all that we are blessed with.
Treatment 2
I’ve decided to allow the girls team to take control of the blog again. (It is theirs anyway.) I feel good about documenting each day of my very first chemo treatment cycle, and would like to now focus on them. (With Halloween and the holidays just around the corner, there is much to share! I know you are all dying to know which costume Mary Clare decides upon this year. Or shall I say costumes? Or exactly what McCanless has on her extensive Christmas and Birthday list.)
With that being said, I have found it is much easier to “get it all out there” and write it once, rather than tell it 35 times to our huge family, text it 15 times to other friends or have Mel call me and explain it to him one more time because he’s explaining it to one more person, so I’ll continue to leave blurbs here and there regarding my treatments. For example…
Treatment 2-Day 2
October 4, 2011- I woke up this morning tired with puffy eyes, but nothing too bad. My treatment yesterday went a little more difficult than the first. I was all ready for my 5 hour nap, but was told that the first treatment always takes longer, as they proceed at a slower rate in case of any difficulties. Yesterday, they hit me up hard and it only should have taken 3.5 hours. I didn’t fall asleep as quickly as I did the first time, and I was FREEZING. I had two heated blankets, my jacket on and a scarf wrapped around my head. After the typical fluids and meds, they were ready for chemo drug 1, the Taxotere. When they administered the Taxotere, it hit me! (Remember the chemo drugs are administered into a port which has a catheter to my jugular.) My face and head felt like a balloon ready to explode. I became so hot and ripped off all of my layers. My chest felt so heavy and I was having difficulty breathing. It was scary. I was coughing when the nurse noticed and turned to administer another drug to ease the reaction. (In her defense, she had warned me that this may happen-still you never think you could be that few percentage.) I think I’ll go buy a lottery ticket today, for sure! (wink)
After I was monitored (BP, O2) and my head didn’t explode-just turned a cute tomato color-I resumed my typical 65 degrees, wrapped back up, plugged back in and we carried on.
Until I had another reaction to the Taxotere. It wasn’t as bad as the first, but it was definitely there. So, new protocol for me. I get to take Prednisone in my medication cocktail line up. Okay, I’m not one to go look up lots of medical info. I learned NOT to do that when MC was diagnosed with HLHS. But, I just have heard some things about taking Prednisone, and had to look. I had to see for my self. Not a good idea. Note to self: Stick to my own rule of no medical research! Just trust docs!
Today, I’m tired. Today, I’m a bit sad because I’m anticipating what tomorrow brings. I get my Nulasta shot today and I know I’ll hurt and ache from that, on top of being more fatigued. Sitting, I feel great, like I could quite possible get up and get a shower and head to school to volunteer and take MC to her dance class and do homework and come home and cook and play outside, like I would normally do. My head is having a hard time telling my heart that that’s not going to happen. I could try and only end up frustrated and calling in troops to help last minute, which isn’t fair.
When did I get to be so hardheaded?
When will I have less guilt?
Today, the emotional battle is the hardest, as I know what lies ahead for this week.
BUT, after this treatment cycle, I’ll head into Treatment Three and that’s half way there! I can do this.
Chemo Journal Day 21
October 2- Day 21
Tomorrow, I’ll head to SCOA for Treatment #2, which means I have officially finished one treatment cycle! One down, five to go.
This was a wonderful week full of energy and “normal” chaos. Now I know that I can do this. I know what to expect and I can now say, “I’ve done it.” It’s actually not as bad as I anticipated. (Remind me of this in a few days.)
If I remember correctly, (and a good friend pointed out) I was quite dazed and confused for a few days after my first treatment making journal entries quite scattered and loosely edited. (Just for the record, I’m leaving them that way. I think it spices things up a bit, don’t you?) So, for now, my journal entries are complete. I’ve done it. I’ve completed a treatment cycle. I’ve documented how I felt each day of my very first treatment, just as “Ms. Nurse Educator” told me I should. I can use this first go ’round as a reference when I wish to compare and as I anticipate what’s ahead each day.
Treatment 2, here I come! Wish me luck.
Chemo Journal Day 20
October 1-Day 20
We did it. Mel shaved my head last night! I must say the anticipation of my hair falling out was more of a bigger deal than it actually being gone! I think God’s way of preparing me for my bald head was to drive me nuts enough to want it gone! (Wink!) I wore a Carolina ball cap yesterday to MUSC and by the time we got back in the car, where I immediately took off my cap, my hair was a mess. I nearly had a bald spot and overall, it was so very thin. That, added to the flatness from wearing the cap created a hot mess. Not a pretty sight. I knew that I couldn’t wash it again. Every morning more and more hair fell out in the shower. It was time.
Mel started and MC seemed to be fine with it, as if she was used to her mom shaving her head. She has yet to even say much about it. McCanless was excited at first, then seemed a little sad as more and more fell onto the towel. I asked her to help her dad and immediately she smiled and grabbed the clippers. She buzzed a few rows. Afterward, it felt strange, but very liberating.
Someone today asked if I cried and many have asked if I’m “okay.” I’m absolutely fine! No tears, whatsoever. I’m great, actually. I met a few friends downtown this morning to buy a few Positively Pink t-shirts and I even went to the Hartsville Downtown Marketplace. (In a hat.) It wasn’t really planned, but ended up being a great way to debut my new look. I’m even heading to the Jazz Festival tonight downtown with Mel.
I was laughing at McCanless taking so many photos of me! My mini-paparazzi.
Baring it all-no make-up, no hair.
McDonald’s with the kiddos this morning.
On to Juice for a bit of Positively Pink shopping!
Today, has been an amazing day filled with so many people that I love, lots of laughter and fun!
Chemo Journal Day 19
September 30-Day 19
Today, we’ll head to MUSC to focus on MC’s health and not my own! She has a cardiology visit and a neurology visit. I’m hoping her docs will confirm that her little heart and brain are doing well!
UPDATE Oct 1: MC’s health is fantastic! MUSC cardiology and neurology visits were great! We enjoyed visiting a few of our favorite docs and nurses and had an amazing dinner at Fleet Landing.
She has been doing great in 4K! (I’m relatively speaking, of course. This is Mary Clare I’m writing about.) Her dog continues to be in the dog house on a daily basis. (Behavior management system) BUT, lately she has had days of NOT ending up in the Dog House! Which means she was there, but earned her way out! Yay, for those days! Her teacher also told me this week that although she continues to take many breaks throughout a task, she (now) always wants to go back to complete her task. She’s not completely zonked after school these days, either. The first few weeks of school, she would fall asleep in the car after school as soon as I buckled her in the car seat. Now, she has as much energy in the afternoon as she does in the mornings. She usually takes a quick nap before dinner, still however. She just can’t make it all day without a quick rest. She’s writing and “reading” and having a great time in 4K.
Chemo Journal Day 18
September 29-Day 18
It’s hard to believe it’s been 18 days since my first treatment. I’m so thankful to now know what to expect. The unknown is always the hardest part of any situation, I believe. Now, I know that week 1 will be difficult, week 2 will be a bit better and week 3 will be my best. I was told that the treatments would snowball, getting worse with each one, but there have been so many others before me who have made it through this journey just fine, and who knows, there’s always a first for everything, maybe my treatments won’t get worse. (wink, wink)
So, my hair… As I type this post, hair is all over the place. It’s driving me nuts. Itchy, scratchy, gross. I’m almost ready to shave it off to rid of it all. My part has grown wider and wider every day and I have a very thin spot right on top, in the front that I’m a bit self-conscious about. So, I think I’m there. I know it will be gone before my next treatment on Monday. I don’t want to have to worry about being itchy on top of everything else. Now, if only Mel had a buzzer. Get ready! The next time you see me my head may be barren!
McCanless also had her first 2nd grade class project. She is studying the United States flag and was asked to create a flag of her own, entirely about herself. (Ms. Jenner also asked that their work be entirely their own with little to no help from parents. I usually stick to this rule with all classwork, but do you know how HARD that is for me? Oh I so wanted to make my own flag for her. It would have been glorious, but I digress.) Ahem. Photos of my girls making their OWN flags. MC had to make one too, of course, but was less inclined to smile for a photo than big sis.
When we have a project, there’s always pink glitter involved.
Chemo Journal Day 17
September 28-Day 17
Mel asked me tonight if I would mind wearing a hair net to bed…yes, it’s that bad.
I’ve had another great day filled with packing lunches, school pick-up, dance, church and homework. I’ve felt very normal and very energetic. McCanless and Mary Clare are doing great and even love joking with Dad about Mommy’s ever changing hair-do. As my part grows wider and my hair gets thinner, I’m realizing that it’s inevitable. The end is in sight. It does, however, help that the loose hairs are driving me nuts. I think I’ll be ready to shave it all off very, very soon just to get rid of all of this hair! It’s everywhere!
The girls team (plus Daddy) is taking a day trip on Friday to our favorite city, our beloved Charleston. MC has a neurology and cardiology visit at MUSC, then I’m sure we’ll find something fun to do. I’m looking forward to a fun weekend before Treatment 2 on Monday.
Chemo Journal Day 16
September 27-Day 16
I’ve had a great day! Very typical, very normal. Well, all except for my hair falling out by the minute-but I’ll not focus on that! Instead, I’ll post recent pics of my two favorite dancers…
McCanless with her Petite Dancing Team
McCanless’s dancing “big sis,” Julia, also a former student of mine. I couldn’t be more thrilled. Julia is a wonderful role model for my little one, who simply adores her!
Chemo Journal Day 15
September 26-Day 15
My text conversation with Mel this morning sums up a lot. This was the beginning and end of our “conversation”…
Kerri: My hair is letting go. Fist fulls in the shower this morning.
Mel: I know how you feel.
Chemo Journal Day 14
September 25-Day 14
Another great day filled with being “normal” and feeling fine! “Normal” today meant Sunday school, church, Subway, and outside playing in the hot weather all afternoon. (I did get a little nauseous when MC and I were on the trampoline, but it was short lived.) We also visited new baby cousin, Leah Brenn, then Kacy and William visited us and treated us to a Sonic milkshake. It’s been a great day!
Note to self: probably not a good idea to jump and roll and flip on a trampoline while on chemo.
The not-so-normal: This morning, in the shower, many strands of my hair were coming out at a time. I’ve noticed that I’m shedding way more than I typically do, but also wondered if I just was “looking” for it, anticipating my hair to fall out. Today, it was most definitely more than typical shedding. It’s odd, though, I’ve not had any of the skin tingles or chills that I had several days ago. I’ve heard I’ll have a sore, tingling scalp before my hair actually releases. “Ms. Wig Fitter” called me on Friday and said that the wig in the style I want, the Reagan, doesn’t come in the “marbleized brown” color that I want. We’ll see what she comes up with…
Also, today I’ve noticed my skin has a couple of blemishes. I’ve not had any sort of breakout since high school, so I’m assuming it’s gotta be the chemo. (Not something I’m excited about.) I may have to hibernate this winter. No hair, skin blemishes… Sounds lovely.
Overall Day 14- Aside from the mega shedding and high school skin, I’m great!
Chemo Journal Day 13
September 24-Day 13
Thirteen must be my lucky number! It’s 9:10 PM and I’ve not dropped dead. (Dead tired.)
This is what the girls’ team was up to today, which was much like my “normal” mom Saturdays…
McCanless spent the night with a friend, so MC and I met her at McDonald’s at 9:00 AM for breakfast with her dance team. (We were a bit late, so I arrived just in time for MC to run wild in the play area for a minute and to change McCanless into dance clothes and drive her to the studio for an all day dance class.) MC and I went to breakfast at the Rooster with friends, where she decided to go swimming in the fountain. MC and I headed back home to change her clothes and went back downtown to run a few errands. We also went to Subway to pick up lunch for McCanless… delivered the lunch, then headed to Walmart for a few necessities….went back home for an hour where I got caught up on a few thank-you notes and MC got caught up on Gnomeo and Juliet, her new favorite movie. Back to the studio at 2:00 to pick up McCanless. Drove out to Nonnie’s house to deliver MC for the night. McCanless and I went home to change for a birthday party in Florence. Crazy FunDayGo! party from 4-6, where I chatted away with so many friends, not sitting once! After the party McCanless and I decided to treat ourselves to a little R&R with a mani-pedi. We’re now home and in the bed, and it’s the first time in 13 days that I can say I felt normal ALL DAY LONG.
Not even the Carolina game on t.v. could keep me up at this point, but I earned this 9:00 PM bedtime tonight! Yay!
Overall Day 13: I felt normal all day, not stopping once!
Chemo Journal Day 12
September 23-Day 12
So today, I feel like the weather.
Blah.
I’m tired. I’m tired of being tired. Even when my day is going great, I hit a wall at some point of just exhaustion. I trudge on, but I’m just TIRED.
Blah.
PM Update: Okay, so I feel better. A headache, but overall better. Still tired, but more like a “it’s been a long, busy week and I’m crashing on Friday” kind of tired. I do plan on going to bed soon. (It’s 6:55 PM, McCanless is at a movie with friends and MC is watching Fresh Beat Band and playing air guitar like it’s nobody’s business. I know she’ll crash soon, too.)
Maybe it was the gross weather that got me down. Rain and Tired. Double Whammy.
I’m also realizing that my hair is shedding a little more than it normally would. Nothing bad at this point. It’s odd to be waiting, watching for your hair to “let go.” I’m almost positive my hair has slowed growth, or completely stopped growing all together. I’ve not shaved my legs in several days because I’ve not needed to. Kinda nice. I guess.
Overall Day 12: Not so bad.
Chemo Journal Day 11
September 22-Day 11
Today, I feel great-best yet! So, today, a few pics of what we’ve been up to…
I know two little chicks super excited about Halloween.
Eeew, I know, but it’s being mailed to Beautiful Lengths, a partnership between Pantene and the American Cancer Society, which makes wigs for women with cancer. And because I have yet to post a photo of me with my new do…
Just Kidding…
Plus, we’re getting another girl in the family. A brand new niece today! That makes 6 first cousins for my girls so far, with many more ahead I’m sure! It’s a great day!
Happy Birthday Leah Brenn! We love you already and can’t wait to share all of our tutus and costumes with you. Reese, you can borrow too if you like!
Chemo Journal Day 10-warning stocking’d head below! (rev. 9/22)
September 21-Day 10
Yesterday didn’t get better after my 9 AM journal. It actually got worse. I think it was more emotional for me than anything. I was tired, but more mentally exhausted. Today was better. In fact, I was busier today than I have been all ten days of chemo, yet tonight I’m not my typical “chemo crabby.” (Not yet anyway.) I’ve had no meds at all and I feel fine. I stopped by SCOA today for blood work and all “looks great.”
I’ve learned, however, that tomorrow may catch up with me. I may pay for today tomorrow. We shall see.
Tonight as I drove through a horrendous storm on I20 on my way home from a day of wig shopping, it dawned on me. The weather was a perfect analogy.
My friend, Donna, who also had her first chemo treatment on September 12, and I spent the better part of today trying on wigs of all shapes, colors and styles. What a surreal experience. We were in the shop no less than three hours discovering our new norm. Although we’ve known each other for as long as my McCanless and her Nick were in 2K, we only recently, truly connected. We chatted non-stop for the hour to Columbia, and while we were shopping and all the way home. We have so much more in common now than children, carpool and packing lunches. We share an entire world that we have been thrown into, rather abruptly.
We laughed at the pouf of “Coconut Almond” and the sassy style of too dark “Mochachino.” We finally settled on the exact same style in “Marbleized Brown” for me and “Number 12” for her. She was bummed her color wasn’t as glamorously dubbed as one of our favorites, “Butter Pecan.”
We walked out of the shop confident and scared about our new purchase. Dark clouds were looming and the breeze picked up. We both were on the phone making sure our baby chicks were where they needed to be and all was fine on the home front. As we headed East on I20 after a quick bite, the storm grew stronger and darker. The clouds were so beautiful, but frightening. I had to drive slowly and cautiously, almost unaware of the surrounding vehicles. We saw several cars on the roadside needing assistance and a few ambulances whizzed by. We both would shutter and gasp at the lightening, yet continued our chatting and laughing, continued our trek. Almost half way home, we could see where the sun peeked through the darkness and we could tell the end was near. Soon we even saw a huge rainbow and as we thought we were in the clear, the sky darkened once again.
I’m home now. It’s slowly drizzling outside, finally clearing.
We weathered the storm today, not without worry or fear, realizing along the way that while the road was uncertain we carried on with hope and laughter.
First, we had to “stocking” our heads. What do you think?
Then, Ms. Wig Fitter narrowed down the hundreds of choices based on what we were looking for.
This is my first attempt to take a photo with my cell in a mirror. Obviously, not so great, BUT this is one of my favorite wigs. The “Reagan.” I also realized in this whole process, that I’m much more suited to be a brunette. I did dare to don a blonde, but I looked like Malibu Barbie Wanna Be. I loved a sassy dark red named, “Charlie.” FYI: I have much better skin tone with the darker wigs, if you care to know. My final choice had to be ordered. I’ll debut when it arrives!
Chemo Journal Day 9
September 20-Day 9
A.M. So, today I feel like I have a chemo-fabulous hangover.
I jumped up and started the day with the girls and the morning rush, excited to wake up to yet another day of energy. (Despite turning into a complete Halloween witch last night around 7, after my fun-filled and very busy day yesterday. I need to realize that even if I feel up to a non-chemo feeling day, it will, in fact, catch up to my very chemo filled body and unfortunately, my girls and Mel will take the brunt-Sorry guys!)
This morning once they drove off with lunch boxes, snack bags, dance bags, homework and dry cleaning bag, it hit me hard. I’m exhausted.
My nurse educator explained that after my few days of yuck from the Nulasta shot with aches and pains in my bones, the next phase will be when my blood cell count will bottom out, simply from the chemo. (That’s its job.) I’ll be exhausted. Once it bottoms out, the Nulasta, which has been hard at work in my bone marrow, will finally show it’s purpose and begin to slowly replenish those cells. Once those cells are back up I’ll feel better and guess what? It will be just in time for round two.
I’m hopeful that I’ll bottom out easily and only have a few down days. I’m thrilled because I now know that I’ll have “normal” days during this whole process. I’ve had a wonderful last three days. After I recharge this morning, I may have chemo-fabulous day number 4.
Overall Day 9 Although it’s only 9 AM, I can tell today will be a tired one for me. I’ll try to take it easy today. I still plan on running a few errands, picking up the girls from school and taking MC to dance, but I’ll rest in between. (My guess is that I’ll not be full steam ahead until I crash at night as I have been in the last three days.)
No nausea during the day, but if I do wake in the night, I’m always nauseated, so I have been taking nausea meds at night. I have a few tummy issues. (TMI, I know, but Ms. Nurse Educator told me this journal is a must.) I’m still having my occasional skin tingles all over, but mostly on my face and head. My hips continue to be sore. Appetite is there, just not as great as it was pre-chemo. MC and I were baking brownie bites yesterday and as we waited for the oven to pre-heat, we dove right into the package for a few brownie dough bites. I was crushed to realize that they were very bitter to me. MC, ate my share. (We were baking them for the letter “B” until I realized that this week she is on “C.” So instead we sent Candy Corn. I know Ms. Chure is thrilled with our show-and-tell choices!)
Chemo Jounal Day 8
September 19-Day 8
I could get used to this. I feel great again today! Mel had an early meeting, so I was on duty for school delivery and drop-off today. I felt so great, I stayed at THA until around 12:30. (Despite no shower, no make-up and the same clothes I slept in last night. I did throw on my Uggs and a fleece, however.) I’ve taken a leave of absence for the remainder of the school year, but have yet to formally “train” my replacement. She certainly needed no training, but I stayed today to show her the ropes. It was fun to be back at work and incredible to see all of my THA babies. What a boost to the self-esteem-such sweet kids complimenting me and hugging me all day!
Overall Day 8-I feel great. I still have a strange taste in my mouth. No nausea. Still no nausea meds. No pain meds. I do feel like a little old lady at times. If I’m still for long, my knees and hips get sore or stiff. I’ve had minor headaches for a couple of days, but nothing requiring medicine. I’m afraid that what I’m also feeling is what will eventually be signs of hair loss. I get “skin shivers” or tingles, mostly on my face and scalp. They feel almost like soft chill bumps or a momentary cool chill. Another day of chemo-fabulous so far.
Chemo Journal Day 7
September 18-Day 7
So today was another wonderfully typical day in the life of the girls team! Mel had a meeting this morning which lasted into the afternoon, so the girls’ team headed out alone to Sunday school and church this morning. Mary Clare sang a bit too loudly, McCanless wrote on one too many offering envelopes, they both escaped out of church and ran into the parking lot as I chatted away with friends after the service, and all was wonderful. Wonderfully typical. We came home and had leftovers for lunch then spent the rest of the day visiting with grandparents, aunts and friends. I even fit in a grocery store run. We ended the evening cruising around the neighborhood on the back of Mr. Frank’s 4-wheeler. Hot dogs for dinner and the girls are in bed asleep at 8:00. It’s been a super day!
Overall Day 7 Chemo-fabulous.
Chemo Journal-Day 6
September 17-Day 6
A.M. Wow, I woke up this morning and just had to journal before the day got “officially” started. I feel great today! It’s only 8:37 A.M. and I’m showered and dressed and I’ve been to the mail box! (So, my “get ready” time has drastically been cut in half due to my short new do, but that’s okay, because I love it. My hair, that is. I love it.)
I just knew today was going to be full of energy and activity, however, I was quickly reminded that I’m not quite up to par, as my brisk walk to the mail box left me winded and tired. I’m now taking a break, like a good little girl. Just as my body told me to. I’m super excited to be in less pain and have energy today to actually live a little. It may be just bundled up in my house with the girls team on this chilly day, but at least I feel up to it! Yay for Saturdays!
P.M. So, I’m taking another “Mommy time-out.” Today has been great. I consider it successful. It’s 4:10 and this is my first “break.” Mel, MC and I went to the Rooster this morning for breakfast. After breakfast, he headed to work and I took MC to the doctor. She’s been coughing like crazy, so I finally took her in. (I was a bit nervous being out alone-images of my experience just yesterday flooded my mind. Passing out in the pediatricians office is not something I ever want to do. Ever-that’s just gross.)
Lucky day, we had no wait. Zilch. None. Crazy. In and out and shopping for candy corn at Wal-greens in less than 15 minutes. Later on, McCanless arrived at home (after spending the night with Nonnie) just in time for a newly downloaded Winnie-the-Pooh Heffalump movie, one of my favorite Halloween movies. We’ve played around the house. We’ve been outside. I’ve done laundry. They’ve ruined the house. Wonderfully, typical. Now, the girls are probably wreaking havoc in the neighborhood somewhere. I told them to give me 15 minutes to sit. Hopefully, they are in our yard.
I’m tired, but not much more than I probably would feel on a busy but lazy Saturday afternoon. Mel will be home in time for the Carolina game tonight and we’re having Mom’s New England Clam Chowder, my favorite. A glorious typical Saturday! Go Cocks!
Overall Day 6 Chemo-Fabulous!
Chemo Journal- Day 5
September 16-Day 5
I’ve realized a few things today. Like hair, aches and fatigue, moments in time are temporary. This morning, as crazy as it sounds, I cried when I shampooed my long hair for the last time. Then I cried when Mel laughed at me for being melodramatic.
“You’ll still have hair to wash tomorrow.”
He truly wasn’t insensitive. Like I’ve said before, we make each other laugh. It’s what we do. Today, temporarily, I forgot that. After my hair appointment was all said and done, and every lady in The Plaza (and Mel) ohh’d and ahh’d over my short new do, I realized it wasn’t such a big deal. It’s only hair. And I kinda like it. Truly, the anticipation of my hair cut was more than the actual cut itself. It’s not my favorite do, but it will do. (For a few weeks at least.) I’ve always wanted to try a short cut. What an opportunity? How many people can temporarily try out a new hair style? Me. It was more of a rite of passage, anyway.
I have also realized today that no matter what I want my body to do, it will tell me what it needs and follow suit. I so wanted to have lunch with Mel and spend a bit of time with him today. We walked into a restaurant and immediately the music was too loud. I was dizzy. I was tired. I was so exhausted at that very moment, I just had to go back to the car. When he came back with our to-go boxes, I cried. I didn’t even make it to Target. Target! Never have I ever given up such an opportunity. I so could have milked it with Mel. Poor pitiful me, having to cut my hair and feeling low would have been the golden ticket at Target today. I couldn’t even muster up the energy to keep my chair upright.
This is only temporary. My hair is short. My hair will fall out. I will feel good. I will feel bad. Temporarily. I was hoping my hip aches would end yesterday, yet they continue on. Those aren’t quite as temporary as I had hoped.
Today my friends cried with me when I shared with them that I was cutting my hair. We cried, then we laughed at how ludicrous that is. Ash even sent photos of me with various bad hair from the decades. Temporarily horrid styles.
Overall Day 5 My hair is now short, thanks to my own choice, not chemo. I’m anxiously awaiting the arrival of my girls, they have yet to see me today. “Bubba” (my dad-nickname given by McCanless) shaved his own head. His own choice, much to my mother’s dismay. Today is the first cool day of fall. My neck feels it for the first time, ever. My hips ache, my ribs ache. I have slight shortness of breath. Little nausea. No nausea meds! Advil for pain. Short bursts of energy, followed by exhaustion. Slowly coming to terms that my body is tired and needs to heal. Quickly coming to terms that this is temporary.
Chemo Journal-Day 4
September 15-Day 4
Wow, has it been 4 days? In some ways that sounds crazy and in others it feels like an eternity. I woke up this morning more uncomfortable physically, but a little more ready for what lies ahead emotionally. I just have to get used to this. This is my temporary new normal. Accept and go on.
(You know I’m no doctor, nurse or any other medical know-it-all, so take what I say as only a non-medicalish person will.) Yesterday, I ached in my upper body, today it’s been in my back, chest, hips and knee areas. I swear the Nulasta shot that I had on Day 2 started in my upper body and has slowly spread down. Crazy, I know. I suspect my ankles and feet to be sore tomorrow, but let’s hope not. Today, even breathing deeply causes soreness and just moving wears me out. I’ve never napped so much in my life. However, spiritually, I feel better. Yesterday, I felt defeated. Today, I’ve realized that I have to accept and move on. I think this helps tremendously. Sure, I’m going to hurt. But this is temporarily. My body is kicking some major cancer booty right now, which is kicking my booty right now too. I can deal. I just have to be patient.
Overall Day 4: No nausea. No nausea meds. Advil for pain. Sore throat, back, hips and knees. Better spirits! Everything still tastes weird. (Except tomato basil soup from Midnight Rooster, thanks mom!) Lots of naps today. Very tired. Tomorrow is Friday. I have a hair cut with my girl, Becky! Looking forward to a fabulous weekend with a short new do. I hope I have the energy to enjoy a bit of cooler weather.
Chemo Journal-Day 3
September 14-Day 3
a.m. This morning, I woke up in tears. I think the emotional impact of what is happening to me has hit. Mel actually woke up first and started getting the girls together. (This has never happened. I’m always the one hitting the floor full steam ahead while asking him a thousand times to get up-I sing, I joke, then I fuss.) His thoughtfulness this morning was truly amazing. McCanless noticed that I was teary, and it broke my heart to see her worry about me. Mary Clare was Mary Clare, fussing about what she did not want to wear, how she insisted her hair look, refusing to potty, etc. She didn’t notice a thing.
As the girls team sat together on my bed, I brushed their hair and my tears poured. I want to take them to school, to dance afterwards, to Wednesday night church. My heart aches to do these things, but my body is not allowing me to do anything but move slowly around my house. Today, I feel trapped. Emotionally and physically. I’ve taken my pain meds, because I just ache in my shoulders, neck and head. I tried to brush my teeth and the toothpaste tasted like thick sugar gum. Coffee is about the only thing that somewhat seems normal today. I’m hoping after a nap I’ll muster up the energy for a quick walk. I always enjoy being outside.
p.m. Today was a long day, but guess what? I made it. My body ached some, but what hurt most today was the the cold hard realization that this is going to be a tough road. One that I’ve been fighting tooth and nail. It’s hard to admit that my heartaches far outweighed my body aches today. I’m not one to sit and allow things to pass along, so it’s excruciating to just be and allow all of this to happen. Maybe this is God’s way of telling me to chill out and just be. I need not worry about trivial matters.
Today, was a great lesson for me. As soon as I journaled I was having a rough morning, my phone started ringing, friends stopped by and blessing after blessing flowed my way. I relished in each and every one of them. I am surrounded.
Overall Day 3: Not much nausea-just a pit of stomach ick. Took one nausea med this morning. Advil and Claritin at night. Nothing tastes the same. Headache, upper back, neck and shoulder aches. Stiff upper body. I took a nap with Mary Clare around 2:30-4, but otherwise kept up most of the day. Brief outside ventures to get fresh air. Doable.
Chemo Journal-Day 2
September 13-Day 2
So, this morning I jumped out of bed glad to be finally free of my fish bowl feeling and I hit the ground running. After calling my nursing friend extraordinaire, April, to administer my Neulasta painlessly-Sorry Mel I do love you,but I just had to call in a professional. “This is great,” I thought, “Maybe I’ll be one of the lucky ones with little to no side effects. Surely on the day after treatment I shouldn’t feel bad anyway, right?” WRONG. After my shower, sweep through the house, and a Wal-mart run, I literally couldn’t make it to my house, so I stopped by my mom’s office and crashed on her couch for about 30 minutes. Once I pried myself off of her couch, I came home and crashed again on my couch. (disclaimer: I have never once in all my years, have ever taken a nap on my couch, alone in my house without one of my children.) I finally jumped up to check on the time. 2:30! Mary Clare gets out of school at 2:15! I jumped up, zoomed to school and gathered my chicks. As typical, Mary Clare fell asleep in the car and McCanless and I tackled homework in peace once we arrived at home. Mom came by to get MC for dance at 4:45 and McCanless went with them. Whew! I was able to sit for a minute again. Thankfully, we’ve had such gracious friends offer dinner each night, which has been such a huge help. What a blessing! The girls are in the bed, Mel’s at a City council meeting and I’m just about to crash once again!
Overall Day 2: No nausea! No nausea meds! No pain meds! Hair still intact! (I did take my Claritin for the Neulasta, however.) Happy that my spirits are up. Thankful for gracious and thoughtful friends who surround me with love and support. Bummed that I couldn’t do as much as I would like to have done. Realization that my good days on chemo are not the same as my good days NOT on chemo. Lesson learned.
Chemo Journal-Treatment Day 1
September 12-Treatment Day 1
I’ve been sluggish all day. Feel kinda like my heads in a cloud. (Like MC on a typical day.) No nausea! And am even more thrilled that I have chosen to work with the staff at SCOA. If I wasn’t convinced until today, I am S.O.L.D. Hands-down, the best place to be (under these circumstances, that is.) First thing this morning, I was met by a familiar face who has known me since I was McCanless’s age. (Remember, Cyndi, my kindergarten BFF?) Cyndi’s dad walked up, dressed to the nines in his bright pink shirt with a smile that could melt the room. So cheerful and happy. A cancer survivor who volunteers his time each Monday along with so many other happy volunteers and nurses. This place is kickin’ Even the music was great! I’m a lucky girl!
On my throne at SCOA
By the way, I’m totally a sunlight girl and have bribed everyone here to reserve me a chair on the wall of windows overlooking the brook and bird feeders. (If I do ever wake up during these things, I at least want to see outside.)
My view today, peeking over my fabulous new quilt.
Guy on my right was hilarious for the first 10 minutes, before he conked out. Girl in the middle came in asleep and stayed that way, and girl on my far left ate Sour Patch Kids, and kept laughing and rolling her eyes at the guy on the end. It was all very funny and surreal. Once I realized I was the only one up, Nurse Crazy Fun, came up and shot with me with extra Benadryl-ish stuff. I swear I asked her if it was Roofies. I was out cold in 10 seconds and remember NOT A THING. Mel swears I ate 8 chicken nuggets from Chick Fil A. I beg to differ.
I digress…I’m going to pull a C-card and say that I’m already in chemo brain mode. (I know it’s probably WAY too early to pull that out, but I’ll try it out to see how it feels.) I know I’m a bit scattered, but here is how the day went…
Mel and I arrived at SCOA around 9:30, after I ate a fruit and yogurt parfait, we checked in, paid co-pay, I had blood draws (again super easy and painless), waited to make sure I was a go and by 10:30, I was getting my port accessed. I was a bit nervous about that, but it turns out, our two chemo nurses LOVE to make everyone comfortable, all the time. She squirted my port area with a biofreeze-type cold spray, and before I knew it, I was being pumped up with my cocktail du jour. She gave me something to make me groggy, which she thought would make me sleep. When that didn’t work, she knocked me out cold with a super duper Benedryl (Note to self: MUST find this stuff for my girls.) Within 10 seconds of her socking it to me, I was out. Cold. Until 4:30. Honestly I was the ONLY one in the room when I woke up. Last man standing, or sleeping, I guess.
Mel resumed his post on his mac and I slept. No thank you notes written, no new kindle books read. No phone conversations for me. We left and I was hungry, so we stopped by Krispy Kreme and I ate THREE chocolate donuts. THREE. No appetite loss here, girls.
It’s 11 pm and I’m tired and groggy but its been a great evening. Earlier, McCanless came over to visit, before heading over to my moms, and Mel and I had to go out to get my arsenal of drugs from CVS, so we stopped my his mom’s to see Clare. She was doing fantastic. Both girls are certainly not lacking attention at this point.
Here’s what I was told to expect: After Mel administers my Neulasta shot tomorrow morning, I’ll need to take Claritin. (Number 1: I’m super thrilled about Mel giving me a shot. Should be fun. Number 2: I have NO idea what Claritin has to do anything with the pain from this shot- I think I’ll do a little research tonight.) Apparently, I’ll have soreness and aches and joint pain (Flu-like symptoms) for a few days after my shot. (Neulasta is a white cell booster-it gets them going to help fight infection, as you understand chemo kills everything in it’s path apparently, and I really need to keep those white ones around!) I also have two oral meds for nausea, one makes me sleep, the other can keep me awake. Once I get over the flu-like symptoms, my nurse said then the fatigue will hit, as my blood count will be lowest during that second week. When week three rolls around I’ll be feeling better by the day and just as soon as I feel normal again, I’ll have my next treatment. So, Mel’s planning a fall neighborhood front yard party for one of those good weeks-in honor of no one, just because he wants to. Maybe that’s what he did all day. I have no clue.
Sidenote 9/13: After realizing Mel has no clue about medicine, I decided this morning to call my friend and nurse extraordinaire, April, to administer my Neulasta. Painless! Best decision yet.
Overall Day 1: Feeling loved, and surrounded and very optimistic that this will not hold me down (too long anyway)!
THA Hat Rally for Cancer
The morning of my first chemo treatment, the girls went with Mimi to school for an early morning Hat Rally in my honor, complete with crazy hats and wigs and pink donuts! Rosemary graciously hosted it and thought it would be a fun way for them to remember this day. Rosemary and her mom completely outdid themselves as usual. (Rosemary is a dear friend, and McCanless’s life goal is to grow up and become “what Belle’s (Ms. Rosemary) mom does.” Ms. Rosemary is the best school cheerleader, decorator, event planner and PTO president ever!
Mimi was able to snap a few photos with her cell phone of the girls when she dropped them off at THA! Looks like fun!
9/11
My nurse educator suggested that I keep a journal of my first chemo treatment and the days following. She explained that the effects of each treatment will most likely follow the same pattern. She also mentioned that treatments will take on a snowball effect. The side effects of each one will not lessen, as I would have though, but they will progressively get worse. I know it will be a long post, but I plan on keeping each day on one page and updating it. I doubt I’ll keep a journal for each treatment, but at least I’ll have the very first to compare.
September 11– The eve of my first chemo treatment. Anxious. Ready to get started. At this point, I’m embarrassed to say I’m more worried about my hair than anything. I’ve tucked the girls into bed. Mel is dozing on the couch beside me and I’m watching a 9/11 documentary on the History Channel. All day, I’ve felt surrounded. Surrounded by love, prayers, support. Today I feel so very loved.
We’ve been busy. This morning, Mel rushed out the door early to speak at at prayer breakfast at a local church, and the girls and I hurriedly dressed for church. As I got ready, the girls happened to turn on the television. A&E was showing a real-time documentary on the events of 9/11. McCanless sat entranced. (It was as if she were witnessing the events exactly as they happened-I was instantly thrown back into my 6th grade Literature class at THA 10 years ago, before McCanless was even born.) I sat down with her and we talked about what happened that day. Even Mary Clare was curious as to why the “mean men wanted to knock down the ‘Kuge’ Castles.” Eventually, a simple “the devil made them do it” was enough for her. We missed Sunday school, but the conversations McCanless and I had surrounding the documentary were lessons that her little mind craved after watching the terrorist attacks. I know the battle I’m facing with cancer is indeed a challenge, but as we sat and watched thousands of people hurting, grieving, it made everything clear. Everyone suffers. Everyone aches. It’s what you do out of that pain and suffering that matters most.
Susan G. Komen for the Cure!
Can I just tell you how amazingly talented my girlfriends are? Unique, artistic, business savvy, creative, completely passionate busy people they are-and moms to top it all off! Meg, Rosemary and Reagan are a few that have spearheaded a Positively Pink campaign in Hartsville (in honor of yours truly) to raise money solely for the Susan G. Komen for the Cure Foundation! And if you don’t know about the Susan G. Komen Foundation…
(From Komen.com: Susan G. Komen Foundation is the global leader of the breast cancer movement, having invested more than $1.9 billion since inception in 1982. As the world’s largest grassroots network of breast cancer survivors and activists, we’re working together to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Susan G. Komen Race for the Cure® and the Susan G. Komen 3-Day for the Cure®, and generous contributions from our partners, sponsors and fellow supporters, we have become the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.)
If you have been living under a rock and don’t know that October is National Breast Cancer Awareness month, you really should get out more. In August, Meg, owner of Juice Haute Kids Couture, creative fashionista extraordinaire and mom of three adorable girls, declared her first marathon would be in honor of me, as I was newly diagnosed with breast cancer. If you know Meg, you know she goes big or goes home. From that one gesture, which has snowballed, she has made it her mission to raise awareness and raise funds for the Susan G. Komen Foundation with quite a lofty and very pinkalicous goal. As soon as she gathered her team of girls, they quickly got to work creating the Positively Pink campaign which will hit the streets of Hartsville soon. (I can’t wait to buy a t-shirt!)
Each and every penny raised will be donated to the Susan G. Komen Foundation.
Notice the half pink heart? Didn’t I tell you I have amazing friends?
This amazing quilt was made by a dear friend.
She’s my age, a busy mom of two young children about the ages of my own girls,
and has listened.
She understands because she, too, was diagnosed with cancer just recently. She found time to create this quilt for me while going through her own struggles. Just for me. A gift I will treasure forever, not only because it’s extraordinarily beautiful, but because it was made by her.
Tub conversations…
Many nights, I take long baths with one of my girls. We sit in pink or purple or blue water, play with Barbies, wash each others hair and just chat about life, homework, friends.
Tonight, Mary Clare decided to take a bath with me. We chatted about school this week, and her new Bible class on Wednesday nights at First Baptist Church. She explained that she needed to take her Bible next week to make her teacher happy, but she said she would rather go to her “real church” to see God. (I assumed she thought Father Michael from our own church was God, as McCanless thought so many years ago.)
Before I went on to explain that Father Michael was not God, I asked her where she thinks God lives.
Her little voice replied, “God lives in your heart” and I almost teared up realizing that she actually learned a few things at her new Bible class.
A few minutes later as we sat in our purple water, she glared up at my port area, as if to notice it for the first time.
With her eyes huge and questioning she pointed to my port, which protrudes out pretty far, and asked me,
“Is God poking his finger out of you?”
Super charged, wonder woman power port installed!
Nope, this isn’t my actual port, it’s a photo of a port on Wikipedia.com
So, I’m not feeling super charged or wonder woman-like right now at all, but having a little metal portal for power drugs makes me feel like I should. The photo above depicts a port (which is about the size of a quarter and implanted under my skin) and the assembly (the square with tube and needle-this is how the chemo drugs are delivered right into the port) Apparently, it’s necessary to have a port “to deliver chemotherapy to cancer patients who must undergo treatment frequently. Chemotherapy is often toxic, and can damage skin and muscle tissue, and therefore should not be delivered through these tissues. Portacaths provide a solution, delivering drugs quickly and efficiently through the entire body via the circulatory system.” Love, Wikipedia.
The port is under my skin on my right chest area just under my clavicle. It’s a reservoir compartment, with a silicone bubble (for the needle) and a catheter, which runs directly into a vain. When I go to SCOA for my treatments, they’ll pop that needle right in and serve me up. I’ve heard they will spray the skin above the port with a bit of anesthetic numbing spray until it toughens up, but when I showed Mel the above photo, he said, “Damn, that looks like a nail.” Thanks, Sweetie, for always keeping it real.
This photo is not of me, but an image of a chest x-ray with an implanted port.
I had my own chest x-ray after my procedure today to make certain of placement, but didn’t receive the film, nor do I even remember it. Too bad. The only thing I remember about today is guiltily admitting to the nurse anesthetist of having a bite of McCanless sausage link this morning, and being rolled down the hallway into the surgical suite and telling Mel I felt like I needed glasses. The next thing I knew I was being rolled back into recovery asking my sweet nurse if she was pregnant. (Did I really break the Cardinal Rule of Women? She was, in fact, pregnant. Whew!)
This is the photo I texted to friends and family on our way home to let them know I survived! The grimace isn’t from pain, as I was still feeling my happy drugs, it’s from the huge bandage and yellow skin around it.
I have a bandage covering my port area and a swollen, bruised neck. It’s sore like you wouldn’t believe and burns like crazy. One nurse told me that Dr. Sweatman would be pulling, and nudging and pushing my port into place, so I imagine that’s why it’s crazy sore. Not sure about my neck. I’m looking forward to going to bed tonight, although I’m sure there’s nothing quite like a metal grommet pressing into your chest to keep you up.
As only a mom would, I swore I could get the girls fed, bathed, homeworked and in the bed all by stiff-necked self, as Mel had a council meeting until late. I made it through Spelling and had MC in the tub when I had to break down and call my mom. MC sat “soaking” until Nonnie arrived to save the day. (Thanks, mom. MC may have turned into a mermaid had you not come to my rescue.)
I’m sure I’m still “enjoying” the effects of the hospital drugs and tomorrow I’ll hit a wall, but guess what? One more procedure down!
Who’s who…
My oncologist, Dr. Butler
When Dr. Sweatman said he was the best, he meant it. Mel’s dad brought a Greater Columbia Business Monthly journal over this week. Guess who I found listed in 2011 Best Doctor’s (SC’s Top Physicians-focusing on treating and curing cancer)? Most of the doctors in the journal were from South Carolina Oncology Associates, in fact. Not only was Dr. Butler featured, my favorite nurse of all time was also interviewed and pictured.
Nurse Navigator, Dottye.
Just another journal entry…
It’s quiet in my house, and that means I have too much time to think. I’m waiting on the girls to get home from the beach with Nonnie. They left yesterday morning and are due back any minute. Mom wanted to take Mary Clare to the Mermaid show at Ripley’s Aquarium. She said MC sat in awe and completely mesmerized throughout the show, while McCanless kept rolling her eyes, telling her that mermaids were NOT real. (Although, she told Nonnie after the show that she had the best day ever.) Typical.
They had a fun evening last night at the aquarium and then hit the Pavilion rides at Broadway. Today, the ocean was a bit rough, so they didn’t stay out long.
Even though it’s only been one night, I miss them terribly. Although they drive me nuts some days, I miss them so when they aren’t around. It’s almost 9 pm, so I’m sure Nonnie will need tomorrow to re-coup. Good thing it’s Labor Day.
I’ve been reading Lucky Duck Hits Speed Bump a lot recently. It’s truly remarkable how much better I feel just reading about my new blogging friend’s journey through breast cancer diagnosis and treatment, and still being able to be a mommy to two young girls and a wife to her hubby. She is very open and honest and takes her treatment on full-steam ahead with humor and laughter. She makes it clear that she understands how it’s a sensitive matter and some don’t feel comfortable being open and tongue-in-cheek. It’s how she deals, though. It’s how I deal. I’m go glad to have her.
It’s easier for me to explain everything up front and tell my story once, right here. I, like my friend, want to get it out in the open. Why be ashamed? Why leave an elephant in the room? Cancer is a big deal, but it’s all around. It evokes so many emotions and so many different reactions. It’s interesting; I’ve learned who is curious about facts, who is sensitive, who only wants to know dates, who I can joke with, etc. I love being open and answering questions that I know.
And if you want to know, but don’t want to ask, here’s what’s on my mind right now…
-Right now, I’m mostly thinking about my girls. I so wish I would have been able to have the surgery/radiation route. It would have been much easier to keep them from worrying about me. Obviously, loosing my hair will be a pretty drastic change in my appearance. They will notice that. (I know that both of my girls aren’t really detail oriented, but if they miss that, I’ll have to call Ms. Irene, for sure, and get to work on that ASAP.)
-I’ve been very honest with both of them. We’ve been talking about cancer and chemotherapy for a few weeks. I’ve explained every detail and every step to them. They know that the medicine that will kill the cancer will also make me tired and will make my hair fall out. As I explained this to Mary Clare one night, she looked up at me with a smirk, laughed, tugged my hair, and said, “It’s not going anywhere, Mom.” Needless to say, we’ve got a bit more convincing to do with her. I just don’t want it to be a shock.
-My biggest fear is that I’ll not have the energy to be the mom I want to be.
-My second biggest fear is that my girls will be afraid of me.
-You know our generation of parents is so accommodating and is so paranoid of “screwing up” our children. Count me in. I just don’t want this to change who they are for the worse. I know it will be a huge part of our family’s story. It will change each of us. I just hope I can help them through it all and that the impact it will have will not be a negative one. Sometimes, I feel that McCanless grew up way too quickly as she watched, lived through her baby sister’s journey with a half-heart. She learned tough lessons the hard way. She learned to understand things beyond her years. She became independent and understanding at a young age. She learned that sometimes, life isn’t fair, but we keep going. And again, that’s what we’ll do. We’ll get through this, and we’ll keep on truckin’!
Cheers! Pet Scan Day is over!
I just woke up from a four hour nap. Wow. I’ve not done that in, oh, ever.
So I had my PET scan today. I had to eat protein yesterday. No carbs, no sugar for two days. If you know me, you know I live on sugar and carbs. (Not good, I know, but I just can’t help it.) I love fish and yogurt, but I’m not a huge fan of big of chunks of meat. Truth be known, dessert is my food of choice. I’ve been known to eat dessert for meals, in fact. Apparently, cancer loves sugar as much as I do. It lives on it. Bummer.
I was to deprive my body of sugars, so that when I sucked down my Barium Berry Cocktail today, which is glucose water with a kick, the cancer would suck it up, making the radioactive chemical that was in me, glow. (This is medical lingo at its finest, people.)
I showed up at SCOA after not eating for 17 hours, kissed Mel goodbye and headed to the LL, Lower Level. LL, is a dark basement type of area at the huge oncology center. I followed all of the bright yellow RADIOACTIVE signs and met a wonderfully pleasant medicalish guy. Not sure if he was a doctor, nurse, tech or what, but he gave me an IV. It was the fastest, easiest, most pleasant IV I’ve ever had. I would have kissed him, but I am married, and I knew he would probably have thought I was crazy. I’m usually great about sticks and pokes, but I’ve felt like a human pin cushion lately, so it was super nice to have that part super easy.
He walked me to my “closet” to sit and wait. It was a tiny dim room with a recliner, lamp, books and television. Dr. Nice Guy also brought me several warm blankets. I liked him even more, as I’m always freezing in SCOA. (I’ve learned to take along a jacket with each visit.)
He walked in with gloves, foot covers and a cart carrying a metal case with my glow drug. After he dosed me up, he removed the IV. I had it in no longer than 10 minutes. Really. Ten minutes, tops. Then he left me with my cup of warm, watered-down milk of magnesium-like cocktail. I was to finish my Berry Barium and wait for one hour in my closet until I became a glow worm.
I decided to ration my time. I sat in the quiet and texted friends for a while. When I finally turned on the TV, TLC’s A Baby Story was on. A woman in labor with triplets was on-full screen. Well this could be worse, I joked to myself. So, I turned off the tv and dozed for a minute. Before I knew it, Dr. Nice Guy was back in to take me to the imaging room.
After another little nap in my tunnel, I was done. Amazing. They did a CT scan and a PET scan. The actual process took no more than 40 minutes. I was out the door and heading to The Gourmet Shop in no time!
It hit me on the ride home. BLAH. I honestly think I was sick from not eating for so many hours coupled with the taste of my “Berry Cocktail” that would NOT leave me. I typically eat several small meals/snacks throughout the day, so I think my body was in shock. I had a rough ride home, and crashed as soon as I walked in the door. Of course, it’s almost 10 pm now and I’m wide awake, but the good news is, my PET scan is over.
The girls are with grands. Apparently, I’m radioactive for 18 hours, so they are away for the night to be safe. I’ll call tomorrow morning to schedule my appointment with Dr. Butler to review results, possibly meeting as early as tomorrow afternoon. I’m off until Tuesday, when I’ll have my chemo port placed with Dr. Sweatman. I’m looking forward to a few days of not having to drive to Columbia.
Prestwood pool is calling our names. It’s officially the last weekend of Summer I’m sad to say, but we’ve got lots planned! I’m glad the PET scan is over, so we can focus on more important things like which bathing suit to wear and what ice cream to choose from the Yummy Truck. (I think I’ll skip any form of a berry cocktail this weekend, however.)
One procedure closer to ringing that bell!
UPDATED-Sept 2, 2011: I got a call from SCOA and my PET scan is clear!! (All except for the breast cancer, that is!) Great news!
What I know.
Tomorrow, August 31st, McCanless has ballet class. I have Chemo 101.
Thursday, September 1st, I’ll have a PET scan. Friday, I have off.
Tuesday, September 6th, Dr. Sweatman will place my chemo port-outpatient.
Monday, September 12th, I will have my first of six planned chemo treatments.
Six treatments. Three weeks between each treatment.
Eighteen weeks of treatment
ending before the new year.
Following treatments, I will have surgery.
Dr. Sweatman was right, Dr. Butler is non-fuzzy. Wonderfully, non-fuzzy.
I do non-fuss, non-fuzzy.
Yesterday, I was ready.
Today, I realized how naive I am.
If you’ve never been in an oncologist hospital,
it’s a sobering place.
I thought I was ready.
I thought I knew what chemo was about.
I thought I could take this on,
head on.
Today, I’m scared.
Today, I visited a place I know I’ll grow to love and hate.
Today, I hurt for everyone who has ever had cancer.
Today, I ache for everyone who will face it.
Today, Mel and I discussed who would care for my girls if I couldn’t,
or wasn’t around,
a conversation I never thought we’d have so soon.
Today, I’m not so sure I’m ready, but here it is.
P.S. After I originally wrote this post, I clicked on a new blog friend’s website. Ironically, she had her very last chemo treatment at SCOA today, ending her journey as I was touring SCOA for the very first time today.She has done it. She was right here where I am eighteen weeks ago. She has worked with Dr. Sweatman, Dr. Butler, and she did it. Posted is a video of her with her twin baby girls “ringing the bell” as a mark of the end of her journey. Cheers to you, my new friend! Well done! www.luckyduckhitsspeedbump.blogspot.com. I can’t wait for the day I, too, can ring that bell!
What do you think?
This morning around 10ish I received a call from Dr. Brooks, the geneticist on the “boob board,” with my BRCA 1/BRCA 2 genetic testing. (Remember, this is the genetic study that checked “me” not “my tumor.” Drum roll please……Genetically, I’m gold. (Well, in the area of breast and/or ovarian cancer anyway.) This means I’m not predisposed to “grow” tumors. I do NOT have the BRCA1/BRCA 2 mutation! Yay, I thought. However, my geneticist reminded me of what I realized last week. This is good news for Mary Clare and McCanless. (I can’t pass along a faulty gene if I don’t have it.) But, it leaves the unanswered question: Why? Why in the world does a healthy 34 year old, with no family history or crazy mutated gene have breast cancer? I think this is what kills these doctors, oncologists, geneticists, surgeons. They can’t explain it. There is no reason. I just have it.
I swear I’m buying a lottery ticket tomorrow.
Then around 2:00, Dr. Sweatman called. (On his vacation week, I might add, yet still called me, himself.) I so love this man. Rephrase, I have so grown to love this man. He said my Oncotype DX results were in. (Remember, this is the study of the biological activity of my actual tumor. The tumor was given a score between 0 and 100 that correlates with the likelihood of a my chances of having my cancer return, and the likelihood that I will benefit from adding chemo to the treatment plan.)
I was sitting on the bench under the front breezeway at THA, my second home, watching parents eagerly walk in to gather their babies or stop by the office to chat with congregating mama hens. Where I’ve taught, worked, loved for as long as I’ve been married. Students watched me learn to be a better teacher, grow huge with the pregnancies of my own two baby girls. The place where I remember parading through the high school halls in a huge homemade Jack-O-lantern costume on Halloween as a third grader, loving art class because I sat beside my best friend, Cyndi Hill, as a new kindergartener. The school that simply adores Mary Clare and gathered to pray all decked out in pink on March 30, 2011. So many memories in this little school.
You know how you just know? The sound of someone’s voice is such a tell-all. I know I’m not the first person he’s had to give these type of results to before. I may be the one millionth for all I know. But, I think it’s just human insight to know. To feel it. We can all read between the lines, between the words. As he began to tell me what I feared most, my mind wasn’t on the specifics of numbers, oncologist information or well-wishes, it was in a state of shock. I think it took my brain a few minutes to digest it all. Did I really hear that? Maybe I’m misunderstanding.
Dr. Sweatman was honest, straightforward and very reassuring. He explained that my Oncotype DX results were not low (no benefits of having chemo) nor were they in the high range (straight to chemo). I’m in the intermediate range, but given all of my results, thorough information and questionable onset, Dr. S feels chemo will be what is best. Since chemotherapy it is, surgery will be postponed until after chemotherapy. It’s likely that chemo will shrink the tumor making surgery less invasive. Fingers crossed. He referred me to Dr. Butler in Columbia with SC Oncology Associates, who is also on the boob board. Dr. Sweatman “warned me” that Dr. Butler isn’t a “warm and fuzzy” doctor. He’s very honest and straightforward in his approach. “Now, don’t be alarmed,” which was all hysterical coming from Dr. S, when so many others “warned” me the same about him. It was nice little jewel, this inside joke. It made me laugh when I so wanted to cry.
Originally, he scheduled a surgery date of September 7. I didn’t “pen-in” this date because I knew it could change. It was a tentative date of a lumpectomy. I would have had my lumpectomy followed by radiation treatment. That would have been the best case scenario. But, just like I always tell Mary Clare, “you can’t always get what you want.” So, September 7 surgery date has been swiped.
Mel and I will head to our favorite capital city tomorrow morning to meet the man who will juice me up with a cancer cocktail plan. I have the utmost respect for Dr. Sweatman and I just feel that what he is doing is exactly what I need. He said Dr. Butler is the best, so I’m going with that, non-fuzzy and all. Hopefully, we’ll have Chemo 101, get a time frame and schedule and possibly a ball park idea of a new surgery date.
Not what I was hoping, but after a quick and very therapeutic three minute cry with a few friends at THA, (Dr. S called just as I was heading into carpool) and a few laughs about a pink wig and sign-up sheet for those who wanted to drive me to treatments, I realize God has given me all I need to get through this: lots of laughter and tons of love.
At 3:00, I made another realization. I had four giggly girls staring at me who needed to get changed and rushed through homework so I could haul them to dance by 4:00! Dance, Mexican, Wal-Mart run (sans girls-once Mel came home from a late meeting) and I’m home. Life as usual carries on. This will not keep me down. I’ve had my three minute cry and I’m done.
Tonight, I’m bracing myself for my non- fuzzy oncologist, Dr. Butler.
I’m ready.
Way to go, girls team!
I’m sitting on the porch this morning enjoying the cooler breeze that Hurricane Irene brings. The house is quiet as the girls and Mel recover from a week of early mornings. The weather is so odd. It was simply gorgeous last night with a Pinkalicious sky. In fact, Mary Clare was in her black kitty costume singing at the top of her lungs “PINK-A-LIIIIIIIIIICIOUS” on the front porch for quite a while. Then it became very cool and breezy.
Same this morning. The sun peeked in my window early, waking me. As I grabbed my coffee and headed to the front porch, it became dark and cloudy. The cooler wind is nice, but I can’t help but feel for everyone north of us. I vividly remember Hurricane Hugo and it’s a scary, destructive force.
I love mornings. It gives me time to reflect. (And desperately needed quiet time alone-even if it is only 20 minutes.) I’m so proud of my girls. Here are a few comments I’ve received this week:
“Mary Clare is a pleaser. She has an amazing imagination and is our class teenager.” Ms. Chure, Mary Clare’s 4K teacher
“McCanless is so well-rounded. Whatever you are doing, keep doing it.” -Ms. Vonne, McCanless’ first grade teacher
“McCanless is a gem. She has a great sense of humor. She’s that child that ‘gets it.’ I always have one in every class. She’s the one I can make eye contact with and we laugh together about something that goes over the other kids’ heads.” -Ms. Jenner, McCanless’s 2nd grade teacher
I’m just like every other mom out there. I think my children are amazing and wonderful and completely perfect. (Most of the time, that is.) But, I do warn their teachers every year how, ahem, “Mel” they can be and how NOT perfect they truly are, like both of us. (wink, wink) It’s fun to hear compliments though, despite the fact that Mary Clare has only been one day (in seven) without her “Doggie” going in the “Dog House” at school.
So, she gets in trouble and still finds time to be creative and imaginative! Impressive, in my book.
I love my girls dearly, with their each and every dramatic loud scream, eye-roll, quirky, temper-tantrum, song at the top of their lungs, strong-willed, glittered costume dancing, painting, passionate and sassy little selves!
Pennington Punnetts
I definitely should have paid more attention in science class. I do think, however, that I learned more about genetics in two hours yesterday than I did in my entire middle school, high school and college educations combined. (Which isn’t hard, I guess, considering I ended up with a BA degree in Journalism.) I remember being interested in those simple four block Punnett squares way back in Ms. Millen’s middle school science class. You know the ones: Big A, little a, Big B, little b. Hybrid. Probability. Genotype. Maternal. Paternal. If only I had paid more attention to the actual process rather than fantasizing about what color eyes my baby would have if I married “boy X.”
My crash course in genetics came yesterday after I received a call at school from the USC genetics lab in Columbia.
“Mrs. Pennington, I’m sure you’ve talked to Dr. Sweatman.” I was sure I hadn’t since my visit Thursday, but I listened on. “As you know, he wants you to come in for genetic counseling and we need to do it today. He wants it done today.”
“AS IN TODAY?” was all I could say. “RIGHT NOW?” I panicked as I immediately thought maybe the Oncotype DX results were in and weren’t conclusive or weren’t good. I packed up and within twenty minutes or so Mel and I were headed back to Columbia for yet another day of testing.
I was completely wrong about the genetics counseling. The geneticist that we worked with is actually on Dr. Sweatman’s “Boob Board” as we now refer to his team of experts which will meet tomorrow on my case. She was a tall blonde, quite pleasant with an amazing accent that Mel finally nailed down as French Canadian and she was full of fascinating information. (Mel guessed she was from Louisiana or France, having lived in the south just long enough to make those syllables linger.) I’ll not go into all of the many specifics of our session. I probably couldn’t decipher the notes she copied for me anyway. But as usual, I’ll give my non-medical version as only I interpreted.
So in a nutshell…Dr. Sweatman asked that I have the BRCA genetics testing done. We’ve had genetics counseling before at MUSC after learning of Mary Clare’s little half-heart. It’s a “session” with a geneticist who chats away asking all sorts of questions about your family history and draws all kinds little symbols and squares. Then, a blood sample is drawn and FedEx’ed away. $10,000 later, you have paperwork with proof of what you already know. Genetically, you’re a hot mess.
So back to BRCA…BRCA 1 and BRCA 2 are apart of a group of genes that suppress tumors. Now here is where the punnett squares would have come in handy. (You know, if I actually listened in Ms. Millen’s class.) You receive two sets. One set from Daddy-O and one set from Mom. If I have a BRCA 1/BRCA 2 mutation, I’m at a much higher risk for breast and/or ovarian cancer. (It’s gotta be from my Dad’s genes or Mom’s-someone passed it down, IF I have the mutation.)
So what does all of this mean? Since this genetic testing tests “Me,” it gives us information regarding my personal well being, and of course, will impact how McCanless and Mary Clare go about their future healthcare. Possibly earlier screenings, mammograms, etc. (They, of course, would be tested once they are older. Hopefully, they get Mel’s genes (for once) and NOT have the mutation, but if I have it, they have that 50% chance. Remember, the punnett.) Also, IF I do in fact have the crazy mutation, it may dramatically change the course of action in my current treatment. We would most likely take a much more aggressive approach.
What is the difference between the Oncotype and BRCA tests? Both are genetic studies; however, Oncotype DX tests the biological activity of my specific tumor-the one living in me right now- and the BRCA tests my genetics and my risk of developing breast and/or ovarian cancer at any point in my life-having to do with this tumor or not. Oncotype DX=all about the tumor BRCA=all about me
So right now, I’m waiting on two tests to come in: Oncotype DX recurrence score, which was shipped to California last week (but has yet to make it to the lab) and takes 7-10 days to process once getting to the lab and now my BRCA gene information, which was shipped to the one and only lab in the US that tests for the BRCA mutation in Salt Lake City and also takes 7-10 days to process. (After my insurance company approves it, that is.)
Obviously, my results will not be available in time for the “Boob Board” meeting tomorrow, so I imagine they will work out a plan for all possible outcomes. At this point, I’m not banking on anything, just sitting tight before allowing my mind to settle on any one outcome/treatment. Besides, I’m too busy with my girls and homework, dance class, and trying to get to school on time, dressed and in one piece everyday! And the rodeo is this weekend!
Just thinking…
I’m utterly humbled by my mailbox. Daily. It’s amazing. I drive up to my house, pulling close to the mailbox, reach in and pull out handfuls of encouragement. I tell myself each time that I MUST get better at sending cards to others. Tears always fill my eyes as I read them and realize that each one is a prayer spoken on my behalf. I’m undeserving, but so very appreciative. I’ve saved each one. I’ve read and re-read each one often. I know this is why I’ve not completely lost it. I’m surrounded by love and believe me, I do “feel the love.”
I do have something that I need to share. It’s like a grain of sand in my shoe. It’s there and I know it. It doesn’t hurt. I could ignore it and actually it could go unspoken of forever and not matter one bit. But it’s driving me crazy enough to want to do something about it. Even in church this morning, I couldn’t bring myself to let it go. It rolled around and around in my head and formed so many thoughts. So, I’ll blog it. Not sure how it may be received, but it’s what’s on my mind at the moment.
Someone once, who had the most sincere intentions, mentioned that, “God only gives you what you can handle.” I completely understand why someone would make such a comment. When life throws a curve ball, and in our case, several curve balls in a row, we have to wonder why. It’s human nature to wonder why. It makes us feel better to know that God is all knowing and He will carry us through this, that He will, in fact, only give you what you can handle because you can handle it. I’m not so sure I agree.
Mel and I both deal with circumstances, not with ease, mind you, but maybe, as others have said, with a certain calmness. I’m not really sure what it is. Like I’ve said before, maybe I’m just too naive or worse, nonchalant– even in circumstances when I shouldn’t be. It may be at times that we are like ducks gliding over the water, paddling like hell under the surface. I think we’ve overcome so much in our lives and have learned how to deal with our curve balls quite well. Only because we’ve had to. We are human, and certainly have our moments, but together, we are a good team. We balance each other. We calm each other. We have learned to move through life, finding the happy and making the most of it, despite the circumstances. We choose to laugh.
I can not believe that God has given me the circumstances that I’ve had to endure. Too often, I believe, we take words from the Bible and twist and rearrange them to fit into our molds. I think we take verses out of context and sticky tape them to our own stories. Maybe to make us feel better or feel smarter.
I have no doubt that God is carrying us. I have no doubt that God knows our plans and has plans for us to prosper. I have felt love and supported my entire life. I know that I’m blessed beyond measure. I also know that God did not give Mary Clare her special heart to prove anything to anyone. I know that God did not give me cancer simply because I can handle it. I know my life story was written before I was born and I know that He knows every word of that story.
I don’t have to understand why and frankly, I don’t want to understand why.
I have a story to tell because of God, not in spite of God and He is the sole reason that I am able to tell it.
Working on patience, pacis and panties (Gaining, loosing and keeping)
First day of school. First meeting with Dr. S. Third night without a paci for MC, and it was her choice! It’s been a long day…
The girls had a wonderful day! A wonderfully long day. I received a text from a friend at school. It read: “MC is fine….meds given with no problem…no accidents…put on every costume in her class room. Tomorrow, Ms. Chure has to teach her not to take her clothes off first.”
Although she didn’t learn the virtue of modesty today, she did learn about the skeleton. As I was pulling MC out of the tub tonight, she asked me why God gave us all skeletons. After a few moments, I realized that with MC, less is more. So, I simply said, “To hang our skin on.” She laughed and said, “You’re right mom! We would be like carpet without our skeletons.” Today, skeletons. Tomorrow, panties-keeping them ON. I’d love to be a fly on the wall of the 4K room!
McCanless was thrilled not to have homework, but not so thrilled with me for forgetting that today was PE day. (Apparently, I was supposed to know this already.) She couldn’t do butterfly flops during warm-up because she had on a dress. She was also reminded that she must always have on tennis shoes for PE days. Next time, she will walk laps. I did remember to pack her lunch with a note, her snack, her book bag with supplies, and a gift for after school and her summer reading project, so I think I did rather well. Despite her little no tennis shoe/dress hiccup, she’s super excited about this year and told me she already received a star sticker for her math work today. Ms. Jenner is an amazing teacher and I know she will have a super second grade year!
I’m thrilled that two friends of mine and two of the most amazing teachers I know will be with the girls this year. It may be yet another tough year for us, but knowing that they have Ms. Jenner and Ms. Chure, both whom I completely trust and love, will make this year so much easier for me. I will never be able to thank them enough.
I also had a first today. I met Dr. Sweatman! After a thorough family/personal history and exam and yet another ultrasound, we sat and chatted. He is obviously a brilliant man with so much knowledge to share. He was speaking so quickly, I found myself having a hard time keeping up. I made a mental note to call Dottye and thank her for explaining all of this beforehand. I just may send her an Edible Arrangement. Better yet, I’d love to go find her and kiss her. Amazingly, I actually understood everything he was saying. She said it all first.
After explaining that he would take my case to his team for the “Breast Conference” which is held every Wednesday, and telling us that ultimately they would confer and decide, he sat down to tell us a few best/worst case scenarios.
He ordered a rush on an Oncotype DX molecular test of my biopsies (It’s the 21 gene study that Dottye explained to me). This is the test that will ultimately tell us if chemotherapy would be beneficial in my case. If my numbers are such that reoccurance will likely happen, then we do chemo. Dr. S explained that if I have to do chemo, I should do it prior to surgery, as it will shrink the tumor. IF Oncotype DX numbers are more favorable, meaning low chance of reoccurance, then we may (fingers crossed) just remove tumor and begin 6-8 weeks of radiation in early September. Team may decide to do chemo anyway, so at this point it’s all a waiting game. Because of my age, they may want to take a more aggressive approach as the cancers that hit “us youngin’s” are the big dogs. The Oncotype test results may take up to 10 days, but at least I know the team meets on Wednesday and a few decisions will be made at that point.
So, again, we hurry up and wait. Dr. S also told us that it’s human nature to want to do something ASAP and he assured me that if he thought I needed to have the tumor removed tomorrow, he would do it. Tomorrow. He assured me that a couple weeks time wouldn’t make or break the deal. He said it’s better to gather all information possible and take the time to create the best, most thought out plan. Good man. He also has a pair of Stadium Pants.
First Day of School 2011
So I snapped these two photos with my cell phone at 7:00 this morning. I was a bit behind schedule and thought I’d never get them awake. (Guess I need to re-think my morning routine.) I must say, it was a slightly difficult start to the 2011 school year.
Once McCanless had her bowl of cereal and I finally dragged MC out of bed, things rolled along quite well. We were out of the door by 7:45 dressed and fed. (MC ate a brownie, which is the only thing I could get in her-better than no breakfast, right?) Have I mentioned to you before that my children and husband are NOT morning people? At all. That hasn’t changed.
McCanless chose both of their first day outfits and had to accessorize hers with a necklace, side ponytail, special earrings, blue sequin flip flops and a green sweater. (Despite the 95 degree weather.) I had to laugh and remind her of the huge cow bell she insisted on wearing on her first day of 4K several years ago. Luckily, MC only insisted on her pink “Sunday shoes,” which are a size too small, I think. After I snapped a few photos, kissed a groggy daddy in PJ’s, and loaded the car with two book bags, two lunch bags, two snack bags, nap mat, “jet pack” (emergency pack for MC), summer reading, supplies, and my camera we were on our way! Day 1 of 180, here we come!
We are already singing, “Who’s the best class at THA? 4K, 4K, Fooooooour 4!”
Smile!
Clare’s not in pain. She’s winking.
Big sister stepped in to help…Smile!
…and Clare, once again, listend perfectly when I asked her to turn around so I could get a bookbag shot. Good luck, Ms. Chure!
McCanless and Ms. Jenner, her 2nd grade teacher.
(MC was busy socializing and refused to take the time to get a photo.)
Have fun, girls!
MRI…Done.
Mel and I had a good day today. Our ride to Columbia this morning consisted of discussing the “more positive than negative” news from Ms. Dottye, my Nurse Navigator, who has been a tremendous help and information go-to! She’s amazing. She keeps up with my appointment times and days and even called me on Saturday to chat. This morning, she called me with more information regarding the pathology report from my biopsies. (I know in 6 months I’ll look back at this post and chuckle at how little I knew. I’ve often done so looking back at my early posts after Mary Clare’s diagnosis…oh well, with time comes knowledge and understanding, and a better grip of all of the medical jargon.)
So, here is the “non-medical” lingo breakdown of my conversation with Dottye, nurse extraordinaire, as I understand it…
Dottye first explained that with any cancer, stage will ultimately be determined after they “get in there” and see it for themselves-the whole picture- and get the tumor out and chopped up and analyzed.
There are three important factors to look at right now (among others, but for now we focus on these): lymph nodes, tumor size and hormone status. (Dottye explaining that the latter, she believes, is most important.)
What Dottye failed to explain this weekend and last week during our conversations was that with my “red flags” (i.e., my young age, not much history) they were thinking I could be a “triple threat” which means unfavorable report status on three of the tests for hormone dependency and genetic factors. “Typically only women closer to menopause have hormone positive outcomes. The few women your age with your cancer typically will have unfavorable status and therefore have a very aggressive cancer-NOT good at all.” So, last week Dottye “and colleagues” thought I was a lame duck. Yikes. Glad she didn’t share that information with me last week.
So back to my hormones. Apparently, my tumor LOVES estrogen. And that’s a good thing, say, than feeding on other stuff that I’m not so sure of. It kinda likes Progesterone. Also my tumor was tested for the Her2/Neu receptor (Genetic stuff, which has to do with the speed of growth somewhere down the line.) My biopsy was Her2/Neu negative. Yay, I guess. Dottye said a yay isn’t too far off, so I’m going with it. If you gotta have cancer, better find the yays somehow, right?
And so I’ll remember:
Estrogen- positive 99%
Progesterone- positive 58%
Her2/Neu- negative
Another tidbit Dottye shared: IF my estrogen was negative that would have been a definite trip to chemo land. The same is true if my Her2/Neu would have been positive. So, I’m crossing my fingers and toes and legs and everything else that I can continue to steer clear of that place. We’ll see. Another indicator of treatment will be an Oncotype DX test. It’s a 21 gene study of the tumor itself. It indicates whether my risk for recurrence is high or low. Obviously, that will happen after the tumor is out.
Another important piece of the info is the type of cancer. Drum roll please……
Invasive Ductal Carcinoma
After all of that testing, today was my MRI to continue on the path of gaining the most information possible to determine the best treatment plan. Once I meet with Dr. Sweatman on Thursday, he will take his findings and information to his panel of specialists. (Oncologists, plastic surgeons, etc. I’m secretly hoping he’ll confer with Dottye, too. I just love her.) The only downside to this is that the panel only meets on Wednesdays. Bummer. I’ll have to wait another week to really have an official plan together, but I’m hoping I’ll have an idea after meeting with Dr. S this Thursday.
My MRI today wasn’t bad at all. When the nurse told me that if I was still it wouldn’t take as long, I channeled my inner Baptist church girl from so many years ago. (When mom made us all sit in a row on the very front pew and dared us to make a peep or she’s jerk us out of the front door and show us how to be quiet.) After a quick shoot up of fluorescent IV fluid to light up my insides (which made me think of those Halloween glow sticks), I crawled up on the table, obviously built by a man, with metal squares in which to place my boobs. I laughed at what I’m sure was a silly sight. I only had on a hospital gown, open-faced like a sandwich top-down and my New Balances hanging over the edge of this massive device.
Glamorous, I tell you. She pressed a button and I was rolled in, as if on a conveyor belt. Forty-five minutes on my belly in a tunnel listening to what sounded like tennis shoes in a dryer and I was done!
I was handed a CD with the 2000 images and reminded of my appointment with Dr. Sweatman on Thursday. So far, so good.
It hit me yesterday….
I think I’ve realized why all of my recent news hasn’t been as difficult as I assumed it would be. (Not that I would have thought in a million years I’d have breast cancer at age 34, or that my baby would have been that miniscule percentage of those having Hypoplastic Left Heart Syndrome, and Epilepsy for that matter.) I even asked Mel if he thought I was being aloof. Shouldn’t I be crying more? Shouldn’t I be more upset?
It all makes sense to me now. When I found out about Mary Clare’s special heart, Mel and I were in a complete state of shock. We walked around for months in a fog barely knowing how to even pronounce Hypoplastic. We were completely lost. Thankfully, she was still perfect and safe in my belly. He and I had time to re-group and learn how to be parents of a medically fragile child before she was born.
Being told my baby has half of a heart was something that changed me forever. That was hard. That was excruciating. I remember many times sitting in the bath tub staring down at my round belly just asking God to keep her in me forever. I knew she was safe and happy there. I was not ready watch her in pain, fighting for survival.
I’m a mom. Mom’s hurt for their babies. I know I’m certainly not the first to say, “If I could take the pain and hurt from my child, I’d do it in a heartbeat. Let it be me.” Moms do that. I’ve lived that. I live it everyday.
This is me I’m talking about now. My focus is on getting myself well so I can continue to be Mary Clare’s biggest fan.
Comparatively speaking, this, my friends, (and by this I mean being told of my cancer) is a walk in the park that will not keep me down.
So, I have cancer…
Mel’s mom gave me a “Boob” bible. It tells me that I’m most likely in the “shock phase” of this journey. You know the one. “It can’t be me.” Denial, resentment at it’s finest. Maybe I’m there and don’t realize it, but what I am feeling is an overwhelming sense of awe. From the very moment I walked out of the exam room to meet Mel in the waiting room after my preliminary diagnosis, I’ve not felt alone in this journey. I am in shock. I’m in shock, amazement, bewilderment and awe of each and every single person who has sent me cards, emails, messages, texts, prayers and love. Each and every single one overwhelms me and makes me feel surrounded in prayer and love. With every word and kind thought, I feel empowered. I was in the shower this morning, after looking at my bruised left breast, not hating the very part of me that’s betrayed me, but feeling today more like I can do this. I know I can do this. This will not consume my life. This is apart of my life and I’m going with it!
So, I have cancer. So, I also have the most amazing friends and family and support that many never realize they have. If only everyone had an opportunity to realize how loved they truly are. How fortunate am I?
A little pink lemonade Q & A…
So tonight, I’m referring to “the c word” as Pink Lemonade. It kinda goes with the whole “when life gives you lemons” deal and it’s pink. We know pink around here. It’s helped us smile in the past, so I’m going with it for tonight.
The following answers are completely my own, and by no means anything remotely close to “doctor-ish” correct. It’s what I know right now. Mel usually focuses on medical talk and remembers specifics. I do not. So, I apologize in advance.
Q: When did you feel a lump?
A: I’ve actually felt one for several months now. Just didn’t realize how serious it was, or could be. I was assuming it was a “left over milk gland” that had lost it’s way or at worst, a cyst that only needed to be drained. (Crazy, I know.) I felt it this past winter and noticed that it had grown into a substantial size last month. I put off my doctor visit one more month because I had a scheduled OB visit. (Again, stupid on my part, I know.)
Q: What size is it?
A: Right now, by ultrasound it seems to be about the size of a sugar cube- based on the dimensions. It wasn’t a pretty shape, like a circle or a football. It was more like a lumpy knot with legs. It’s an “Intermediate” grade tumor.
Q: What is the time frame for everything?
A: Not sure. I had my OB appointment last Wednesday, August 3rd. I was scheduled for an ultrasound the following morning. I was referred to Dr. Cupples for diagnostic tests and diagnosis on Monday. After another ultrasound, mammogram and vacuum assisted core biopsies of the tumor and several lymph nodes, Dr. Cupples made the diagnosis and referred me to Dr. Sweatman. I’ll have an MRI on Tuesday, August 16th and meet with Dr. Sweatman on August 18th for a plan of attack.
Q: Where have I been the past couple of days?
A: I’ve actually been going into work this week. Mel’s mom has been graciously keeping the girls for me, so I can gear up for the start of school. I left my phone in the car today while I was at school from about 9-5. I had several texts and messages. Sorry, I just forgot about my phone. I got home and had to take out the trash, fix dinner and play Wii with the girls. Life as a mom, as usual. Right now, as I type this, McCanless is in her dance clothes and new fuzzy Winter vest and is performing a fashion show. MC is naked, in skates, eating strawberries. Mel is poised and ready for a fire alarm as there is a huge storm brewing outside. Like I said, life as usual continues on.
Q: Have I told the girls?
A: Yes. Dr. Cupples called me on Tuesday around lunch. I was making chicken noodle soup and grilled cheese for the girls. As I was talking to him, I forgot about lunch and burned the grilled cheese. Later, after fresh grilled cheeses were made and the girls and I were sitting at the table chatting away, I asked if they had ever heard of “cancer.” McCanless said, “Yes, Basil has it.” (Basil is one of our cats.) For years, Mel and I have joked that Basil, a stray cat that we began feeding years ago would clearly die “soon.” The poor cat sneezes and has very little hair-for four years now. We’ve been afraid to catch him for fear he’ll bite us and we’ll get some crazy cat disease. So, we make sad jokes about Basil, yet keep him fed. Poor cat.
So, McCanless’s idea of cancer is a hairless, wheezing cat. Fantastic. Once I explained that Basil did not have cancer, I had to explain as best I could to my baby girls…
“Cancer is like a bug. You have heard of a virus before. Right? Sometimes in the winter, you two get viruses and you must take medicine to help get it out of your body. Cancer is a little like those viruses, but it’s a really, really bad virus. Mommy has cancer and it needs to get out of mommy’s body. The doctors will probably have to take it out of Mommy. I’ll have to take medicine to help.” McCanless then asked me where the cancer was. As soon as I said in my breast, Mary Clare burst into laughter.
“Mommy has bugs in her boobies!” MC said through giggles. She heard the very first words of my explanation and nothing more. We three sat there laughing hysterically. I think it went rather well.
No words…
I just received a sweet, sweet note from dear friends and neighbors just now. It read:
Words.
Wish I knew some.
I have been diagnosed with breast cancer, officially today, and as bluntly as that sounds, it shocks no less stated differently. It’s how I was told yesterday, point blank, holding the hands of a stranger, lying alone on a paper covered table in a dimly lit exam room. I received the call with the biopsy results just an hour ago, confirming what my gut and Dr. Cupples already knew.
I can’t say that I’m angry. Or sad. Yet. I have, a few times in the past 24 hours, questioned God. What else? Why now? But for the other 23.5 hours in the day, I’ve played with the girls, cleaned house and I’m doing what I do. Today, however, I’m savoring those little mundane tasks a bit more than I might otherwise. I drove to Wal-Mart to buy Pledge and thoroughly enjoyed my coffee and the beautiful morning drive. I made grilled cheese and chicken noodle soup for lunch and asked McCanless to say her own prayer so I could hear her sweet voice and personal requests. I had the girls nap-and they did so quite easily for once- so I could quietly blog, vent, enjoy the hum of the den ceiling fan alone. I’ve often thanked God today, something that I should do everyday despite the circumstances. I’m living. I’m learning.
It comes as no surprise to my family that I’m being nonchalant about it all. Although, I’m not really trying to be. Ironically as it sounds, I’ve never been much of a talker or worrier, for that matter. I can easily pour my heart and soul out on my blog somehow though. This is where they see a small window into my brain. I truly wish I was better at it in person, but I’m not. So I blog.
It’s odd. I feel like only women over 40 get breast cancer. I do still have 6 more years to go! Yesterday, I could only think of my dear friend, Betsy, who lost her mother to breast cancer when we were in elementary school. First grade, I think. She left behind Betsy’s older brother and my curly haired friend at such tender ages. I always ached for Betsy, but never with the understanding as I do now. I always thought of Betsy. Yesterday, every ounce of my being and my every thought was with her mother and how painful it was knowing she was leaving her babies behind.
Yesterday, Mel and I ate and laughed and ate some more to deal with the news. Mel is definitely a stress-eater. I was simply along for the ride, but we couldn’t help but laugh together. It’s what we do. In fact, he’s already designed our “Relay for Life” t-shirts to read: Half-a-heart, half-a-boob and half-a-brain. (We’re still working on a “half” nickname for McCanless.)
I’m certainly not the first to fight this battle and I’m not the only one. I know I’ll beat this. I have no doubt in my mind. It’s just another bump in the road that forces us to stop dead in our tracks and realize that we aren’t in control.
There are no words to explain how I feel right now. There aren’t enough words to explain how thankful I am for my life and everyone in it. Just like Bec’s note, I’m not sure of what to say or how to say it. I do know we have so many on our side and if my MC can beat the odds and make it through three open-heart surgeries and Epilepsy with her tiny half-heart, this will be a piece of cake for me. Pink cake!
Patience is a virtue
that Mary Clare has yet to acquire. (Can you acquire a virtue? I hope so.)
Have you noticed a trend in her recent photos? It’s no surprise to find her A) in a costume or B) naked, these days. I don’t fight it, especially with that face.
See? (Mimi texted this photo to me yesterday.)
Is it really only 15 days away?
So, reality check today. I went into work for a few hours to “get a head start” before the beginning of the school year rush. It didn’t help. I’m now just as far behind, and now I know how far behind I actually am. I was oblivious before today. Of course, this happens every year. I panic. I dread. I get excited. I get scared. I get emotional. I get ready. I start nesting.
Yesterday, I allowed McCanless to rent two movies on Netflix while I cleaned out my bedside table drawers and my closet. (I know, I know, “Mother of the Year Award” does not go to me this year-I guess I should have made her work on her summer reading.) Oh well. Mary Clare busied herself for hours with a trunk full of old dance costumes I pulled out of the attic. (You do what you ‘gotta do!) I’ve organized bookshelves, bins and bookbags; gotten rid of “too tight” clothes, old toys and books; bought pencils and paper; I’ve re-organized the playroom/ new homework study room. We registered at dance and I’ve penciled in all important August dates. Ready or not, here it comes!
In 15 days, I’ll have a 4Ker and a 2nd grader at Thomas Hart Academy! Wow!
So, Ms. Chure, are you ready?
Summer Art Camp 2011
McCanless has always been my creative soul, constantly doodling, drawing and very often with a paint brush in hand and paint on her clothes. Even when she decides to settle in for a movie, she’ll grab her lap desk and drawing pad, drawing as she watches. She was able to attend art camp this summer at The Painting Chameleon and thoroughly enjoyed herself. She was so proud of her work at her exhibition at the end of the week.
She was so proud of her work and I’m so proud of her!
Screen on the Green 2011
This summer, Hartsville has hosted many great movies in Burry Park with a brand new HUGE screen! So fun! We love to pack our popcorn, drinks and goodies, spread out our blankets, watch a movie and socialize, of course!
After watching Rango, the girls, full of popcorn and sweets, decided it was time to play “sheriff.”
(These photos were taken with my iPhone.)
Happy Birthday BB! We love you!
We spent a weekend at the lake with our “Pennington Family” celebrating BB’s birthday! A wonderful time was had by all!
How can someone so tiny accomplish so much?
I just realized that four years ago this week (two days ago on the 20th, to be exact) was when we brought Mary Clare home from MUSC. Wow, what an amazing four years it has been.
July 2011
Insert song, “I will survive.”
I found this little post hanging out in my blog “draft” folder tonight. I, most likely, became distracted or didn’t have time to finish it and ultimately forgot it was there. (I started the post ranting about the first week of school and ended it discussing internal clocks and rodeos. Like I said, somewhat distracted.) Reading it tonight, threw me back in time to the first week of school last year, and reminds me that we have only a few short weeks until we start it all over again. Alarm clocks, homework, dance, routine, morning “disagreements,” lunch boxes, etc., etc., etc. Ready or not, it’s almost here!
August 2010…We did it. We survived the first week of school, and it didn’t kill us. (I did, however, almost kill my oldest daughter a number of occasions, but I didn’t.) Mornings are definitely not a highlight of our days by any stretch, but hopefully with a few more weeks under our belts, they will get somewhat tolerable. I never believed in “morning people/night owls” until I married Mel. Even then, when I realized that we had opposite internal clocks, I felt he could certainly change his ways, and become more productive in the mornings, like me, if he so chose. Naivety at its best.
I have, on a number of mornings, announced aloud my desire to awake ONE day to smiling family members. Funny. How ironic to angrily demand that my family smile.
I do. I wake up with the greatest of ease. I jump up happy, ready to begin. I have had to learn the hard way that not everyone can do this. McCanless will never be a morning person. I know that. I believe that. I live that. Last year it took me a while to master our morning routine so that we could accomplish two things: 1) Making it to school before 8AM without killing each other and/or loosing our voices from the yelling 2) Arriving to school with clothes ON.
I always make breakfast. I always give her time to adjust and awake. I always let her be. I have never restricted McCanless in her choice of clothing. (The matching bubbles and bows and smocked dresses went out when she gained the power of language and independence at age two. She is head strong beyond belief and to attempt to change that would ruin her spirit and change the McCanless that I know and have learned to appreciate.)
Yet, every morning is the same. Hard to wake up. Hard to get moving. Hard to breathe. So what to do? I just accept the fact that my children and husband are not like me. It takes a while longer for their engines to get rolling. Just like they had to accept the fact that Friday night I stayed home when they went to the Rodeo at 8PM. I was done. The thought of going to a loud, crowded, Rodeo after dark was not something I was ready for. Mel packed them up and headed out without me….
And just because I’d like to share…
this photo (that I took last week one morning) sums up my girl in the wee hours of a morning quite nicely. Can’t wait till next month!
Prestwood Swimming Lessons 2011
Mary Clare started swimming lessons today at Prestwood pool! She has done so well so far this summer with her floaties, but after today I think she just may be a great little swimmer-sans floatation devices- by next week! She’s already swimming under water and her swim instructor said she (naturally) had the most beautiful breast stroke. (Can you tell I’m one proud mama?)
“That’s my mom.” -MC
Once she caught a glimpse of my camera, she really hammed it up!
“That’s my girl.” -Mommy
Not sure why she uses goggles. She keeps her eyes wide open under water!
Guess who else is learning something new?
Summer Dance Workshop
McCanless participated in a 3 day summer dance workshop this week at Dizzy. She was super excited to get back into the swing of things with dance! (She’s in the middle.)
Tonight, some of the “big girls” were at the studio rehearsing. As soon as McCanless realized that they would be warming up with the big girls, she quickly told me I could leave. When I didn’t leave immediately, she politely ordered me to leave. (Not before I completely embarrassed her and snapped a few photos!)
She came home tonight whirling and twirling and wishing dance season began now!
Big Hearts
Check this out!
Haarlow Cousins at Mimi and Bapa’s House
Andrew-8, McCanless- 7, Molly- 6, Sophia- 5, Mary Clare- 4, Will- 2
Everybody JUMP!
She finally took the plunge! She did it! She jumped off the deep end! We were at Prestwood pool last week, swimming in the rain and Ella, MC’s school pal, convinced her that it isn’t so bad! (A little peer pressure isn’t always a bad thing.) Jump after jump after jump, she mastered it! Way to go baby girl! Mommy is so proud of you!
We (Heart) friends…
Saturday, after kissing Daddy goodbye and sending him to Idaho for the week, we took off to meet a few of our most favorite people in the world. Rebecca Butcher was gracious enough to offer her home for a lunch date pool party! Kim, a heart mama that I haven’t seen in four years was there too! Kim and her daughter, Bella, were in the heart unit with us during MC and Bella’s very first heart surgeries.
Emerson and her mommy were there of course.
Mary Clare, McCanless, Lauren (Emerson’s cousin) and Emerson. We are missing Luke and Austin in this photo, the youngest and only boys at our little party! Big brothers, Wyatt and Davin, were with their Daddies for the day.
Luke, Rebecca’s youngest son, and Mary Clare were wearing diving rings as crowns.
I finally caught these two together and smiling! They are usually too fast!
Can’t forget…
I’m just like every other mom out there. I swear I’ll never forget the cute little saying or quirky/incorrect use of a word that my girls occasionally mention. But, I do. When I finally get that moment to sit and “write it all down” they have escaped me. Mary Clare has been on a roll lately, so while she’s napping this beautiful Sunday afternoon, I’ve decided to take a moment to write down a few…
Mel is on a business trip for the week and McCanless spent the night with Nonnie last night, so it was just Mary Clare and me lying in bed this morning. She said, “Mom, you need to have another baby so Daddy won’t have any room at all to sleep in our bed.”
As I was tickling her foot after a bath earlier this week, I grabbed her little foot and pretended to munch on it. I told her I was going to eat it up. She said, “Mom, you can’t eat my foot!” I replied, “Yes, I can. I made it.” She quickly came back with, “NO, you didn’t! God did!”
After Mary Clare danced and sang and baton twirled her way through our church service today, we stopped to chat with Father Michael on the way out. After a few hugs and high fives and as we were on the lawn of the church, she looked at me and said with such sincerity, “God is so nice, Mommy.” (I had to turn around and tell Father Michael the high compliment that one of his youngest parishioners paid him today, then I took the car ride home explaining to MC that Father Michael was NOT God.)
I’ve learned that if we eat on the run, as we occasionally do, it is in my best interest NOT to get meal deals with my girls. They don’t eat french fries and usually waste most of the “meal” anyway. It’s much better if I opt out of the “deal” and stick to a la carte ordering. Mary Clare yelled at me on the way to Charleston this week after I handed her her lunch. “Mommy, this is not what I wanted. I need a Happy Meal, not this no-toy sad meal.”
We sing constantly. In the car, at home, in the shower, in the bath, when a circumstance hits and an appropriate song comes to mind, we belt it out. All four of us. And after the July 4th week with the Woodhams, I realized that all of the Woodhams do it too. (And usually add a dance along with it.) Yesterday, I belted out something or another, and I heard a familiar and sassy little, “HUSSSSH!” To which I replied, “Why can’t Mommy sing, Mary Clare?”
“You make my ears rumbly, Mom!”
At Mimi and Bapa’s pool this weekend, MC asked why we were cooking black rocks for dinner. Perplexed, we all searched the yard for a hint at what she may be asking about. Someone caught a glimpse of the grill with black coals ready to be fired up and realized that it did seem as if we were about to roast a few black rocks on the grill!
July 4th Week with the Woodhams 2011
We had an impromptu visit to Pirate’s Voyage dinner show in Myrtle Beach. Super fun! (And I just may use the website as a sound machine tonight…) Mary Clare sat speechless and mesmerized throughout the entire show! She loved every minute of it, especially the mermaids!
We couldn’t get photos during the show, but had fun in the gift shop after the show.
Happy 4th of July!
F-16 South Carolina coast Patriotic Flyover-always an amazing and humbling site. (F-16s travel the entire SC coast and record for troops deployed overseas.)
Daddy, “Bubba” and Alston opted not to hit the beach with the girls’ team. (Poor new brother-in-law, William had to work.)
Pennington Girls
Guess who we found on the beach? Santa, a retired veteran himself, visits with beach goers and supports the troops every 4th of July during the Flyover.
Ice Cream truck!
Preparation is KEY in the annual 4th of July Calhoun Drive Golf Cart Parade. (…and our secret weapons this year, the garden hose and baby pool full of water, also helped.)
Ready…
Aim…
In our defense, we only attacked when we were hit first.
Fireworks on the beach!
My little firecracker still doesn’t like loud noises, so she, Nonnie and Kacy went back to snuggle on the hammock and enjoy the fireworks from a distance. A perfect ending to a perfect 4th of July.
So, Mel made a movie…
He couldn’t stand it. The wedding photo booth photos are too funny not to share. So he made a movie and posted it on YouTube. (Like it or not.)
Photo Booth in the House…
My sister had a photo booth at her wedding this month, complete with a trunk full of “props.” By far, the best reception past time, ever. Truly hilarious. My girls weren’t the only frequent users of the booth. (Not sure the guests realized that my sister would get a copy of ALL of the photos-wink, wink. Keeping it PG for the blog, folks.) Here are just a handful of the 600+ photos from the evening.
Happy Pinkalicious Pirate Mermaid Pool Party Birthday, Mary Clare!
My little 4-year-old Pink Mermaid
Mermaid McCanless, or “Mercanless,” as she sometimes calls herself.
Aaarrrggg!
We asked guests to donate to “Coker’s Heart Fund” in lieu of gifts. We had such generous donations totaling over $400! Coker has found a wonderful home with my sister, Kacy and her new hubby, William. We are trying to do all we can to help get Coker’s heart fixed so she can have a wonderful and full life just like Mary Clare. I cannot thank everyone enough! Thank you, thank you, thank you!
Hot dogs and goldfish, MC’s favorites! (…and cake, of course!)
Sweet Emerson, MC’s Heart BFF!
Happy Birthday to my sweet MC! What a wonderful day filled with shell necklaces, family, floats, friends, pirate patches and cake! Perfection!
“Look at this stuff, isn’t it neat…” (Little Mermaid circa 1989)
I just can’t get that song out of my mind. I guess because I’m merely hours away from Mary Clare’s 4th Birthday Pinkalicious Mermaid Pirate Pool Party. (Mouth full, I know-she insisted.) The girls are napping and I’m waiting on Mel to get home from work so I can get to work on the party! I do love a good party. The girls’ team has already gotten the mermaid-pirate booty bags (heehee) together. I ordered super cute number 4/starfish glitter cookies, bought shells and beads and included a pirate eye patch all tied together in a cute little muslin bag. (Thanks to my sister’s wedding leftovers.) McCanless and I stamped the bags with nautical images and tied each with twine and a cute little “Love, MC pink pirate tag.”
I took the girls party shopping last week and while most of everything is taken care of at the pool, we always like to add girls’ team touches. Pink and pirate table cloths, grass skirts, shells, shell necklaces, pink pool toys, pink and silver balloons, pink pool noodles, etc. I know it will be fun!
We ordered a cake this week and with the girls’ help it is a masterpiece (mess) of mermaid, nautical, pirate, beachy decor. I love designing a cake to compliment our parties, and it seems that my girls have inherited my party planning genes, so I let them take over this year. It’s obnoxiously cute. We also have pink “ocean cupcakes” with waves and mermaids and pink glitter starfish. Mary Clare ate more starfish cookies today than we’ll actually have at her party, but it’s her party and her day, so we’ll let her get away with it. Miss MC certainly deserves every single pink mermaid and piece of glitter that is what this party is made of. I can’t wait to see her in all of her 4 year old glory. Thanks be to God.
Foxbrier Farm Horse Camp 2011
McCanless loved every minute of horse camp this week. She was there every evening from 5-8 learning all there is to know about caring for and riding horses. She’s taken lessons before, but I think this week sparked a new found love. Her instructor said she was wonderful with the horses and was a natural. McCanless even asked Daddy for a horse for Christmas. I’m not sure our yard, which is in the city limits, would be conducive for farm animals, so maybe a few more lessons will do the trick!
Foxbrier Farm has an amazingly beautiful barn, AND it’s right in town!
Mary Clare and Reese watching McCanless. Sweet Reese is at every single dance recital, and girly “show-off” my two have. So sweet! (Thank you, M&M and Reese’s Pieces!)
First cousins and BFFs with blonde hair and brown eyes, often mistaken as twins!
Mary Clare and “Baby Edward”
My little equestrian
So wonderful to see…
This overwhelms me with hope and happiness.
Four Weddings and a Funeral…
Wasn’t that a movie?
That title wouldn’t escape my mind this morning as I hurried around thinking of all we’ve had going on lately, and still to come. In June alone, we’ve had Camp Seafarer for McCanless, a week-long Funeral Director’s Convention in Myrtle Beach for Mel-the VP of the SC Funeral Director’s Association, an unexpected 4 day EEG at MUSC for Mary Clare, my sister’s wedding and now Mary Clare’s 4th birthday this weekend. Not to mention all of the “typical” events in any given summer month: weddings, birthdays, showers, celebrations and city events. McCanless also started Horseback Riding camp yesterday evening. Whew!
I took the girls to the pool yesterday to relax after a long wedding weekend and I was shocked at how McCanless has progressed with her swimming. She has been able to swim (thanks to Uncle Kurt) since she was three. She was visiting Sissy and Uncle Kurt while we were at MUSC with Mary Clare when she took off across the deep end alone and has been a little fish ever since, refusing swim lessons. “Those are for babies,” she would and still proclaims.
Yesterday, she took off across the pool freestyling and I was shocked. She said she learned at camp last week. Which she says was a blast. When we picked her up we heard all about camp for the four hour ride home and how much she loved it, and I’m seeing remnants of camp every single day. A song here, a new blessing there, and freestyling across the pool yesterday! I’m so proud of my girl!
My Little Mustard Seed
We don’t let a few seizures keep us down.
Non-doubting. Steadfast. Believing that she can move mountains.
Update on Miss MC
Mel, Mary Clare and I are at the beach while McCanless lives it up at camp. (I wouldn’t dare tell her we went to the beach without her. She would be furious! I’ve been writing her at camp and telling her how bored we are, which is far from the truth.) Mel has his annual SC Funeral Director’s Convention this week and it’s usually something we all look forward to. Several days at the beach at the Grand Dunes with Daddy is always a treat. I almost skipped this trip because we’ve been so busy. (At MUSC last week, New Bern for camp this weekend, etc.) But after Mary Clare had a seizure in New Bern, I decided I wanted to tag along with Mel just in case. (I just had a feeling Mary Clare was a little “off” this week and I didn’t feel comfortable alone.) I’m so glad I did. She had a seizure last night on the way down in the car and another tonight at dinner.
I know I’ll never get used to seeing her seize. It is something so unnatural and certainly not how you want to see your baby. Mary Clare seizures aren’t as violent as they have been in the past, but they are longer. She usually comes out of it after a few minutes or so and we’ve only had to use her Diastat (emergency meds) a few times. It’s amazing how differently we react now after she’s had dozens of grand mal seizures. Tonight, we were with a few other couples and as I noticed her slip into a seizure, I patted Mel’s leg to let him know and I gathered Mary Clare up into my lap. She was on the end of the table and I had her facing away. Only the couple across from us noticed. After the eternal few minutes when she was slowly coming back to us, she grew upset and angry. For about 20 minutes, she was very sensitive to lights, sounds and smells. In fact, when a huge lobster came to our table, she asked them to take it away, it was yucky. I took her outside to recuperate and Mel called Dr. Turner to touch base. By the time we joined our table, she was playing and singing, had taken off her sandals and was dancing around the restaurant barefoot.
We have a plan with Dr. Turner and trust him completely. I’ve heard from more than one Epilepsy mom that finding the right anti-seizure meds/combination/dosage is the most frustrating part of it all. I hate to wish away time, but I will certainly be happy when all of her seizure activity settles down a bit. She’s one tough cookie and has beaten odds before. I’m sure this is just one little bump in the road for our feisty little sweetheart!
Guess who’s at camp?
We took McCanless to Camp Seafarer this weekend!
After meeting up with a few THA pals last night, we toured the beautiful city of New Bern, right outside of Arapahoe, where Camp Seafarer is located.
This was the Dessert Social held last night. It was a chance for the girls to meet other campers before heading to camp. I was surprised at how quickly McCanless started meeting other girls. (I think having a few THA familiar faces gave her that extra boost of confidence.)
Mary Clare on the steps of New Bern City Hall.
After entering the camp grounds and being directed by cute girls bearing Seafarer shirts and big bows, excitedly waving and yelling, “Ahoy!” we pulled up to Cabin 10 and unloaded the car. I unpacked her bags and we made her bed. (Top bunk, thank goodness. She was so looking forward to having a top bunk, so I was relieved to find her sailboat name tag right on top!) She also realized that her two THA first grade pals are in cabins 8 and 11. Not her cabin, but close enough. Her counselor asked if we would like to walk down to the pier (above). Once we were down by the water, I realized that she was excited and ready to be on her own. I knew it was a perfect time. (Not a perfect time for me, but it was time for her.) I told her Mommy, MC and Nonnie were heading home. She took off without even hugging me. As she took her first step on the pier, I called her name and told her I needed a kiss bye. She smiled, ran to me, squeezed tight and ran back to her new pals. Bittersweet.
I am so very proud of Ms. Lillie, as she introduced herself to all of her new camp buddies and I will miss her this week more than she will ever know!
Lemonade
8:35 am Mary Clare is soundly sleeping as I type this. She and McCanless quickly fell into summer schedules last week. (Yes, it only took my not-so-morning girls merely days to succumb to lazy summer mornings.) After this hospital stint, however, I’ve got myself a full fledged, self-proclaimed “almost four-year-old” night owl. She and her Daddy stayed up well into the dark night watching movies, giggling, and hiding under stiff white hospital blankets.
After her load of Keppra yesterday… (They wanted to get it in her system, so an “IV load” is a way to quickly achieve this.) Mary Clare had fewer Myoclonic seizures. Yay! It makes me breathe a bit easier and hopefully not have to watch her like a mamma hen when we return home. As Dr. Turner said, “She still has an “off” EEG. The Keppra doesn’t “fix” her EEG reading or Epilepsy, it merely stops some of her seizures.” I”m hoping Keppra is the answer and it stops all of her seizures! It still amazes me that she has been having so many seizures and many times we don’t even realize that she is having them.
Thinking back to when we learned of her HLHS. I realize it has been an evolution. I don’t think I will ever become “used” to her having a half heart. I will always hope and pray that somehow, we will wake up one day and her heart will be complete, low Oxygen levels won’t linger and she’ll no longer need her daily orange pill. I’ll be able to dream of her having her own children and living to be 100 with no further complications or procedures. But. I’m a realist. I know that it will be a lifelong struggle for her. It took me most of my pregnancy to accept this and while it isn’t what I dreamed for her, she is what I dreamed of.
If I had my choice, sure, I’d not want Epilepsy to be in her thick medical charts. But it is. Mary Clare has HLHS and Epilepsy. I’m still learning to embrace it. Like I said, it’s an evolution. I’m hoping that in a few months, maybe years, I’ll be able to say, “Sure, she has Epilepsy and it certainly doesn’t slow her down.” Just like I’ve learned to proudly tell people that she has overcome three reconstructive heart surgeries in her three years of life and is great! “Her heart is fabulous, just like her.”
Her EEG may be far from normal, but what is “normal” anyway? How boring would life be if my children both behaved every minute of the day (or even half the day for that matter), or painted inside the lines or kept quiet when they should, or dressed in perfect coordination with well groomed hair? My girls choose to sing loudly in crowds, they fight for what they want, can be outspoken and very opinionated, and they sleep in. They dance and play, often barefoot, and love socializing and sweets. How amazing it is to know that one day I can look back and know that it’s okay. Life handed us HLHS and Epilepsy and all of the amazing and wonderful things right along with them and it’s okay. Look at all of the fun we’re having.
Below, she was admiring herself in the mirror on her bed tray.
MC EEG Study
12:24 Day 1: “Sooner rather than later…” is what I was told. All I heard was “come now.” I called our neurology NP yesterday to touch base. To let her know that MC had an “off day” and that I was on top of it, noting all thirty-plus of her myoclonic seizures and staring spells and that I’d even thought to take her to our local pediatrician to check for any underlying illness she may have (which sometimes will cause an increase in seizure activity). Sure enough, MC had an ear infection. That coupled with a busy week of summer play and pool time, I just knew the NP would note it in MC’s file and assure me that we’ll get to the bottom of her seizures with the EEG scheduled for July. She asked me to hold for a moment while she chatted with Dr. Turner, our neurologist.
“How soon can you get here?” I’ve heard those words more than I care to remember and have almost become a pro at minimizing our hospital bags to merely three total. Mel finished a few things at work, we packed the car with our three bags, laptops, iPad, and hit the road. McCanless, thankfully, was already spending lots of time at Mimi’s with her cousins, Molly and Will, and will stay there until we come home. Dr. Turner wanted the EEG sooner rather than later.
Depakote is not working. It is the “go to” seizure med, and typically works very well for the types of seizures MC has. MC is not typical we are realizing once again. She was put on Depakote after her Fontan in April with hopes of controlling her Epilepsy, but it’s just not working. Her “tics,” or myoclonic seizures, have increased in frequency and she continues to have generalized grand mal seizures. As I’ve said before, neurology is a mad science. It’s a highly educated guessing game and we are currently in the process of trying to figure out the correct seizure med combination and dosage for her. We don’t know why she has them or why they only recently started or if there in a genetic condition that we are missing. We know that she has Epilepsy. We know we need to get her seizures under control. This is where we are. So we are back “home” at MUSC on 7 East.
We arrived late afternoon yesterday and we were able to get her “hooked up” to her rainbow Rapunzel hair. We have already “caught” several myoclonic seizures on film and EEG, so at least that’s some progress. Still, it’s disheartening to see how many she actually has. It’s more than we thought. We never even knew she had them while she was asleep. She has seizures when we aren’t aware of them. Dr. Turner is determined to do all he can to get them under control. She will be weaned off of Depakote and has already started Keppra by IV.
If you’ll notice, MC has been visited by “Junie Bug” her tooth fairy! Junie Bug left a pink note and lots of sparkly money last week after MC tumbled down a flight of stairs losing two of her tiny bottom pearls. (Although they do look like little shark teeth with the roots still long and intact.) Although I missed seeing the tumble, I’m convinced that she had a myoclonic seizure, which resulted in her fall. She’s been falling a lot lately. The seizures that we have been unaware of may be the culprit.
MC is napping peacefully now after such a late night. We hope to head to the Atruim for a magic show after her requested cheese pizza lunch. (If we can handle carting her IV pole, wireless EEG monitor, and video monitor pole with us-It may be a long afternoon.)
Dear Diary,
9:00 AM Just decided to take a moment to update you on life as I sit on the front porch with my daily morning “coffee and mac moment.” Whew! Summer has taken off and is in full effect. The girls and I went to the pool every single day this week and only took a break yesterday to head shopping, which is another ordeal in and of itself. We even stayed at the pool an unprecedented 10 hours one day. Mary Clare and I headed there around 11 with lunch. We ate, swam, waited on McCanless who had spent the night with a friend, swam a bit more, and ate a bit more. When McCanless arrived, we replayed the day then headed to the playground with the “regular” pool crew and by 5, one mom suggested we order pizza delivery. We got dinner and a second wind. Once the pool closed at 7, we headed to the grassy field and playground by the lake to catch fireflies. Love summer!
Yesterday, we switched up our daily summer schedule and headed for a girls shopping excursion. (Only after visiting the Downtown Marketplace and having lunch at the Midnight Rooster.) I thought as the girls got older, shopping trips would get easier, maybe even fun-not so much. At one point yesterday, I was in a tiny dressing room at Target, MC and McCanless (laughing at me standing there almost naked), were loud, giddy and obnoxiously tossing a huge red ball around, nearly busting out a light fixture just before MC crawled out under the stall as I’m still half naked trying to coerce her to return to the stall. They had to try on bathing suits, shoes, goggles, clothes, sunglasses; test lawn chairs (for Mimi’s pool), and new bikes; purchase new bowls, spoons and muffin tins for our summer kitchen projects. Apparently, they have big plans for summer. “Mom, LOOK at this,” I heard way more than I care to remember.
Then, we had two more stops in Florence.
Needless to say, our shopping excursion was our only accomplishment yesterday. We did, however, make it back in time to head to Mimi’s for dinner and swimming with Molly, Will and Casey Haarlow, our Rome cousins visiting for Bapa’s birthday week. More fun times in the pool. We’ll head back over today for a cookout and more pool time. I’m convinced that the girls will grow gills before the end of summer.
Not only is McCanless perfecting her freestyle stroke and dive, she is counting down to summer camp! One week to go! She is so excited and can’t wait to get there. She is certainly growing up way too fast and it breaks my heart. My little gap tooth dreamer is quickly becoming my brace face with attitude hanging out with her friends at the pool snack bar every day. She’s so funny and still has her Daddy’s quick wit. I can’t wait to see how camp life treats her.
In MC health news…I’ve been cautiously watching Mary Clare this week. We’ve had a busy, fun week, but definitely a tiresome week. I was concerned that it was a bit too much for her. She has seemed to take it all well, but I can certainly tell when her little body has had enough. She didn’t nap at all this week, but has crashed at night and sleeps until around 10 every day. She continues to have her daily “tics,” her myoclonic seizures. She may have 5-10 a day, but has not had a grand mal since her May 20th, 7 minute episode. We will head to Charleston in July for an EEG video study. They’ll get an EEG read for 3-5 days and will add a second seizure med to her daily regimen. I’m not thrilled to add a second, but I know that we need to get her seizures under control. It breaks my heart to know that she’s already on 500 mg of Depakote a day, and it’s still not working. I just don’t want this to change her little personality in any way. I already feel that the Depakote makes her more aggressive and maybe moody some days. I guess it’s all a process. We’ll get there. In MC heart news, she’s doing great! For the first time in her life, she’s only on her daily asprin! No BP meds, or anything else! My baby girl is so amazing and I’m so proud of her. This summer we hope to tackle potty training and maybe even learn to swim without floaties. (Wouldn’t that be a hoot, to learn to swim before she’s potty trained!) I’m certainly not pushing her or setting discouraging goals. Life is certainly too short to worry about the trivial. She may not wear big girl panties just yet, but she has survived more than most people do in several lifetimes!
I have two amazing little girls that are loving every minute of life! Now, if you’ll excuse me, I have a pool calling. (Once the girls wake up, that is.)
School’s out for Summer!
…and guess who’s getting ready for camp?
We’ve begun to gather everything on her checklist and she’s written her counselor a letter. She created a countdown to camp poster for the kitchen and she’s ready! Camp Seafarer, here she comes!
St. Barthelemy, FWI
Right outside our Rosa Villa.
We drove to the Hotel St. Barth- Isle de France, above, where we stayed on our honeymoon ten years ago.
The flight to St. Bart’s from St. Maarten is about 10 minutes and an experience entirely in itself. Above is a photo of the landing strip.
This is where I spent lots of time…coffee and croissants in the morning, shade rest in the afternoon, a drink before dinner. I even read two books on my new kindle. I’ve not been able to read two books consecutively (and guiltlessly) in a weekend in a long time, 7 years to be exact.
Mel loved driving our convertible SMART car and hated to return it on our last day!
Surprise! He got me…
So, turns out, we weren’t heading to the Florida Keys last Thursday after all. I honestly didn’t realize where we were headed until we drove up to the Florence airport early Thursday morning. I read a tweet on my phone from Mel and mentioned to him that he “accidentally” typed in St. Bart’s instead of the Keys. (I know it sounds crazy, but this is something I KNOW Mel would do, accidentally.) But he didn’t. When I finally realized he wasn’t joking, I could have kissed him and killed him in the same moment. We were flying to St. Barthelemy, French West Indes. That day.
I nearly panicked as the plane took off and I realized that I was leaving Mary Clare not only by three airplane flights, but through customs as well. Out of the country was not what I bargained for. It took me one walk along the crystal blue beach merely hours later to realize that Mel and I needed the time away. Together. Alone. I actually enjoyed myself and constantly repeated aloud to myself and Mel, ” If Mary Clare has a seizure, she has a seizure.” She has had so many since her surgery and she just may have one while I’m not with her. It’s a reality. We’ve lectured our family. They know the drill.
Mel and I lounged by the beach just beyond our villa gate, practiced French, explored the island we fell in love with on our honeymoon and thoroughly enjoyed each other in way too expensive French restaurants. St. Barthelemy is truly Paris on a tiny beautiful island. I was refreshed, rested and slightly sunburned (as opposed to my crispy pink hubby) and ready to see my babies last night.
Upon returning home, we were told that Mary Clare did, in fact, have a seizure while we were away. On Friday morning she had a pretty bad seizure, which lasted 7 minutes. Longer than any previously. She was given Diastat to stop seizing. I just knew that after a few weeks with little to no “tics” that we were over the hurdle; her seizures were merely repercussions of a very traumatic open-heart surgery in March that were beginning to fade with healing and time.
I have to listen to that voice inside telling me that she is so happy and healthy for a baby girl with Epilepsy and half a heart. She will have seizures, just as she will always have a half heart. It took me nine months of thinking and wondering and questioning to truly accept her HLHS, to embrace her HLHS and it’s still a journey. It may take me that much longer, but I’m determined to embrace this new part of my spunky, sweet MC.
Mel and I can’t wait to take Mary Clare and McCanless back to St. Barthelemy one day to show them both of where we once discovered each other and found each other again and realized what truly matters is no big surprise.
Surprise!
Dear Kerri,
We aren’t going to Islamorada via Miami…
We’re going to St. Barthelemy in the French West Indes (*Where we spent our honeymoon ten years ago today.)
I love you,
P
Text/Phone Conversation yesterday…
Text to me from Mel:
islamorada
Ready for some sun?
Not too much sun.
Text to Mel from me: ?
These were photos from old texts (obviously-that’s McCanless in the last photo), and I was utterly confused. After no response for a few minutes, I decide to call Mel…
Me: What are you “texting” about? I thought you “fanny dialed” me accidentally. What is islamorada?
Mel: Surprise. We fly out Thursday morning. We’ll catch a flight out of Florence to Charlotte, then to Miami. I’ve rented a car so we can drive down U.S. 1 from Miami to Islmorada, off the Florida Keys. I just booked it.
Me: What?!?
Mel: Yep. In three days.
MC’s Neurology Clinic Visit
Today, my mom and I drove down to MUSC with Mary Clare for a neurology clinic visit. I was anxious to visit and talk to her neruo team to try to get a few answers. But as is typical with neurology, I left with almost as many questions as when we arrived. I absolutely love her neurologists and everyone that we work with, I just get so frustrated with the field of neurology. It’s so different from cardiology. So gray. Cardiology seems much more black and white. I like black and white. Yes or no, up or down, good or bad.
I’m learning. I’m trying. I’m getting there. Slowly.
Mary Clare has continued to have her daily “tics,” which are a bit nerve wracking, but I have learned to just watch her, note them and carry on. No biggie. She doesn’t even realize it. She has had a few days since she was discharged last month with no tics, which are great, but as soon as I brag on those tic-free days, the next day, she’ll have 10 tics or a seizure. She woke up last Thursday with a swollen face and just not herself. As soon as I realized her swelling didn’t seem to be “sleepy morning bed face,” I called her cardiologist NP to discuss. She wasn’t quite herself and had a 10 second seizure with about 30 minutes of blank stares and tics. We were on the road to MUSC within the hour. After blood work and an echo, she was cleared by cardiology. No troubles as far as her heart. Neurologist was able to review blood work and we learned that her Depakote is, in fact, at a therapeutic level and her kidney and liver function is in good shape. Good news and bad news. The good news is that the Depakote is in her, at the appropriate level, and not harming her body. Bad news is that she is still having seizures. She had a 10 second seizure on the way home from Charleston that afternoon.
So today, we discussed options. She’s doing “okay” on the Depakote. It seems that she is more aggressive and hyper, although most children become “more mellow,” our NP said today. She explained that there are those rare kids who are adversely affected. (Should have known-even Benadryl hypes up both of my girls.) Her seizure activity has definitely calmed down lately and her seizures are much shorter and not as violent. I’m hoping and praying that the further away from the stress and trauma of open-heart surgery we get, the less seizures she’ll have. We’ll see. Her team also wants to have a three day, video EEG study within the next couple of weeks. Hopefully after that, we’ll have a few more pieces to the puzzle and will be able to make further decisions regarding her Epilepsy. Until then, we’ll continue on. We’ll play outside everyday, eat lots of cupcakes and look forward to the pool opening up and summer!
Cupcakes at Cupcake in Charleston today.
Dizzy on Broadway 2011
We took a few minutes to snap a few photos in our yard before we left for the Dizzy Dancin’ 2011 recital, which was held at Center Theater downtown.
…and of course, the girls took this opportunity to practice their best poses and twirls!
(McCanless is in the center)
This photo was of the petites in the opening number. Unfortunately, this is the only photo I have of McCanless in the recital. I was so busy helping her change into her five different costumes, I had very little time to even think. I was so very proud of McCanless. She loves dance and it certainly shows. She was simply amazing! She takes her dancing very seriously and loves to perform. (After the first costume change, I found her backstage in tears because she thought she entered the stage on the wrong side! It only took her a minute to realize that she had several more dances (chances) to hit every step perfectly and show off her dancing skills! And she did!) She is quite the dancer, if I do say so myself! So proud!
MC patiently waiting for her turn on the big stage! She loved watching her big sister shine! We were all anxiously awaiting to see how Miss MC would perform this year. (If she would even perform at all, like last year.)
She did it! She actually stood up and danced! At times, she seemed to want to sing and dance to her own beat, but isn’t that how she takes on life? This is Isabel and Mary Clare, two amazing little “Broadway Babies!” I am so very proud of both of my own Broadway babies!
Always the last to know…
If you know Mel, you know that he can be a “last minute” kind of guy. I’m often in a rush to get home to shower and “make an appearance” somewhere because Mel gave me about a 15 minute warning. I’m not present at many of his events simply because he failed to mention them to me. Others will graciously compliment some act of generosity, a successful motion, a great motivational speech, all of Mel’s and I try not to stare in complete ignorance like a deer in head lights. I’m always the last to know. He’s not big on details, and frankly, he doesn’t have the time to tell me about every little event. When we do convene, we chat, laugh, discuss the girls and our family life mostly. I’m very often left out of the major details of funerals, city life and his clothing company. It works quite well this way, however, it is nice to pass along some of his accomplishments and brag sometimes.
Case in point. A friend sent this link to me today, which I had no idea about.
Best. Family. Ever.
What an amazing Mother’s Day we had this year! I was treated to a yummy breakfast of cheese grits, coffee and jelly beans all prepared by McCanless yesterday morning. That amazing treat AND and a brand new Kindle, that I’ve been dreaming of for quite a while now! (I just can’t seem to pry the iPad away from the girls long enough to use it as a reader, so I needed my own.) Mostly, I’m happy that Mel was able to spend the entire day with us. We went to church, went to my mother’s house for lunch and came home to play in the neighborhood. It was such a fun day. I’m the luckiest girl ever! Love my girls and my hubby!
Go Clare!
Many have asked…and Mary Clare is doing great! No seizures since last Saturday! This morning, she and her Daddy went to an outdoor fun day for a local corporation. Mel said she jumped in the jump castle and had a ball! McCanless and mommy hit the shops for a bit of Mother’s Day shopping. We met Mel and MC at the downtown marketplace and ended at lunch at the Midnight Rooster. A typical Spring Saturday! Yay!
Dizzy Dancin’ Dance Photos
So, my girls have my hair. I’ve tried to convince McCanless that you should just work with what you have, not aim for something totally unattainable. She’ll get it one day. Until then, I’ll try my best to temporarily give my girls the curly locks they dream of. For dance photo day, I asked both girls what they wanted. Curls, of course. They know how difficult this is, but once a year, we give it a shot. We’ve tried hot rollers, sleeping in sponge rollers, even benders, paper towels, wet, dry, gel, hairspray, curling shampoo. Everything. Once again, I pulled out a curling iron, which seems to work best, and went to work…
Ta-Da!
Unfortunately, it lasted as long as it took to step outside. When we arrived at the dance studio (a mere few blocks away downtown), the girls’ hair was as straight as when we began the entire ordeal. Oh well, at least I got a photo of it temporarily “curly.” What I failed to get a photo of is Mary Clare in her dance costume. I was so busy keeping her all together and clean before the photographer called her, I didn’t have a minute to take one myself. She was so excited to see so many friends, she was all over the place running and playing. Afterward, I was so concerned about getting her out of the white and black costume (complete with white gloves and pill box hat) before it was ruined, I certainly didn’t have time! Oh well, I’ll post the photos from the recital. I can’t wait to see what she does this year on stage.
As for McCanless, she was too busy socializing to get a photo with little sister anyway.
I didn’t get shots of her hip hop costume, her absolute favorite costume. It was the last one of the day for her, and I think I was “done.” She had a ball. Dance and performing are so McCanless. She truly loves it. She’s in five dances in the recital this year and couldn’t be more excited. She can’t wait.
Countdown is on…
I’ll have to admit. I’ve been in sort of a “blog block.” I try not to write each and every post about Mary Clare’s health issues, but it seems they are almost always on the forefront of my mind, no matter what is going on. Little miss has been a bit high maintenance lately, too, so that certainly doesn’t help. Things are winding down for the school year and with that comes a whirlwind of non-stop activity until summer. The countdown is on. McCanless finished up her group piano lessons with a lovely recital. I was at home with Mary Clare, but saw a video of her amazing performance via Iphone thanks to Uncle Robert! She performed her rendition of Mary had a Little Lamb to perfection! I was so proud. We have several new pieces of original art-a pottery fairy house and several paintings thanks to the amazing art class she was in and completed last month. This week, we are gearing up for dance recital. She will be in five dances this year. Amazing. She loves it and can’t get enough. I’m so proud of her. She is truly an amazing person. She loves art, music and dance. In my book these are skills you can’t fake. (You can, however, hire math tutors!) She has done super in first grade this year, but is ready for summer fun to begin. She’s also declared that she will be attending overnight camp for a week this summer, something Mel and I both agree will be a fantastic experience.
Mary Clare slept in today until 10 a.m., had a full day of play and came wandering into the den tonight at 10 p.m. demanding that her daddy or I come to bed with her. (After being in bed well over an hour.) Not sure when we’ll get her back on a schedule. She went with me today to take McCanless to dance and she thoroughly enjoyed herself. I guess she hasn’t really been around many children lately, so she was thrilled to see the little dancing girls and to be able to run around the studio and play. Mentally, she’s definitely ready to take on the world. I think I’m having a hard time with that reality. Mel and I both treat her like she’s 18 months old, something we both know will bite us. (Already is.) Not sure if it’s the “youngest child” or the “heart baby” or just “MC,” but she has us both wrapped. It’s pretty bad. Even McCanless completely spoils her and gives in to her every request. Mary Clare is a mess and so funny.
This weekend, Mel was off, so we headed to the beach. I was so consumed in Mel and the girls and taking in every moment first hand, I didn’t even think to grab my camera at any moment. No shots, whatsoever. We had a ball. Mel and the girls slept in, I made coffee runs alone (heaven), we ate Krispy Kreme donuts. We visited all of our favorite restaurants and ice cream shops. We sat on the beach for hours and we even played hookie and stayed until Monday. The girls, although so very close to each other, are so very different. On the beach, Mary Clare roamed from family to family in search of friends. She made no qualms about walking up to total strangers, young or old, boy or girl and plopping down beside them to “share” their toys or snacks. She had groups of older children -new friends-at her beck and call and gathered all around her. While McCanless determinedly jumped her rope, roamed alone looking for shells or sat under the umbrella just relaxing with her Junie B. Jones book, Mary Clare was like a little fairy floating around and socializing on the beach with everyone. She is certainly her father’s daughter, while McCanless is turning out to be more and more like her mother, enjoying her quiet and alone time.
Mary Clare also had two seizures on Saturday. The first one, was a grand mal lasting only about 20 seconds while we were on the beach. The second, another grand mal, was at a restaurant on Saturday evening, again lasting only about 20 seconds. It is amazing how differently we react now after a seizure. Dare I say we are used to it? Honestly, seeing my child have a seizure is the single most horrific thing I have ever witnessed first hand and I don’t think I will ever get over it. The images of her seizing are burned into my memory. But her sweet little dimple and infectious laugh seem to make those images melt when I see her. Every day those images get pushed back a bit further. My heart doesn’t pound as loudly as when she had her first seizure. My hands don’t nervously shake as long after. We don’t even call her doctor. We do what needs to be done, make sure she is okay and we move on. Exactly what so many other parents of epileptic children do. We’re no super heroes. We’re not doing anything special. We do have an amazing little girl who just happens to have a half heart, epilepsy, a strong will, a huge sweet tooth and a very hard head.
Gotta remember these…
While in the grocery last week, getting fresh flowers, I admired the tulips. McCanless and I were trying to decide which color to brighten our Easter table. After a few minutes of discussion, Mary Clare shouted from her seat in the cart, “Mom and Cannie, just get the Pink Lips and lets go!”
McCanless was sitting on the beach this week in the bright sun with a new bikini the Easter bunny brought her. I heard her laughing and giggling to herself.
“What’s so funny, McCanless?”
She grinned and said, “Look mom, here are my gills.”
Unsure of what she meant, I turned to find her leaning to one side with her little chubby rolls lining her rib cage, creating her “gills.”
We both rolled in the sand laughing hysterically.
Often, I’m asked, or told rather, “I don’t know how you do it.”
Honestly, I don’t either. Not that I have a choice in the matter, anyway. I’ve always been a “laid back” sort of person and I’m sure that helps. Acceptance is another huge factor. I’ve come to realize that although life isn’t exactly as I planned, it’s far more than I could have ever dreamed it would be. It is truly amazing. I’m not really sure why I’m asked that, honestly. I feel so lucky and so blessed with our life. Sure, the easiest path wasn’t just placed in our laps, but what we are able to truly see because of all of the bumps and curves of the path we are on is spectacular. The view is amazing and I wouldn’t want to see it with anyone else.
Wednesday, McCanless learned to ride her bike without training wheels! She’s had bikes for years, just never had the patience to “go for it” without the security of training wheels. She’s an all or nothing kind of girl. If she can’t go all the way, she’s not going anywhere. Her bike was out at my mother’s house, with a big grassy yard. She was so determined to get it, she fell and cried, and fell and cried and was so angry until she finally got it! Then, she was determined to perfect it! She’s certainly a determined soul. I pray for my patience with her every single day. I’m starting now, so when she’s a teenager, I’ll have reserves.
Mary Clare is slowly gaining strength. She’s playing outside with her big sister often (probably a little too rough) and having fun getting back into the swing of things. She’s asked to go to school, so I think she’s a bit bored with me.
She also had another seizure yesterday. At the time, I was in a bit of panic mode because it was so very different than any of her previous seizures. She’s been having her “tics” every day since being discharged from MUSC, something we’ve almost become used to. I write them all down and note the time to have a record. There is really no rhyme or reason. In fact, she only had two on Wednesday. I was hopeful that Thursday would be “tic free” day, possibly. She woke up around 9 and had two immediately. She had them about every two to five minutes. Mel went to work, McCanless was at school. I wrote down every “tic” she had until about 10, when we were playing in the sun on the back deck. She was at her sand and water table, and I had gone into the kitchen for a few minutes watching her out of the window. She came walking into the kitchen and was staring at the wall saying nothing. When I got on my knees to talk to her, she was staring right through me with that all too familiar face. Immediately, I grabbed her and ran to the den, where her “emergency backpack” was. As I tried to talk to her, she still stared into space and never responded to me. After about a minute, she seemed to pop out of it and grew angry with me because I “took her away from her sand table.” I called Mel and he and I both watched her for about 30 minutes. She had two more staring “spells” and had very strange behavior. She would be dizzy and talking like a baby, running around silly, then go back to normally playing at her table. It was very odd and very scary. I put in a call to her neurologist and just watched her. After thirty minutes, she curled up into my lap and fell asleep. She slept in my arms hard for an hour.
After talking to her neurologist and realizing that it was definitely a seizure, I’m prepared. It wasn’t one I have seen before, and I was terrified. Now, I know. We altered her Depakote and plan to talk to her neurologist regularly about her seizure activity. She’ll have blood work soon to determine the levels in her blood and we’ll go from here. Just like every other day. Each day is a new adventure with both of my sweet girls and as I’ve said, this path may not have been what I planned, but the view is spectacular and I certainly wouldn’t change it for anything.
MC News
Today, we visited our local pediatrician to have the last suture removed from Mary Clare’s chest tube site. I didn’t realize how emotional I would be. As Mary Clare and I walked hand in hand to the car, it hit me. She has nothing left to complete from her Fontan! Although her little body still has a long way to go, we are making it. We are here. Finally. No more lines, leads, wires, tubes OR sutures in her little chest. (Visible, anyway.) Nothing. Wow. How amazing it is that merely three weeks ago we were completing her pre-op day. Three weeks ago.
I spoke to her neurologist NP yesterday regarding her Myoclonic seizures that she is having about 8-10 times a day. They are sudden jumps/jerks that she has no recollection of. They concern me a bit, but we have decided to give her current Depakote dosage another week to truly get in her system before we make any decisions. I really hate to increase her dosage because she seems to be having a difficult time adjusting to it. She gets dizzy and stumbles often. She never complains but I can tell she’s not quite herself. Sometimes, however, I can’t tell if she’s being extra MC dramatic because of everything that has happened or if it’s the Depakote, but I’m definitely noticing different mood swings. It could be that she’s three. She’s a girl. She’s Mary Clare and she just had open-heart surgery. Who knows at this point. We’ll take our time and use her cues as to what she needs. I am just so very thankful that she is able to be at home and recovering!
Speaking of “new normal”
We have our morning and nightly medicine ritual down so far. MC certainly did not like taking her meds in the hospital, and still isn’t a huge fan of lasix, but every day gets better. She is taking Depakote for her seizures- 125 mg in the morning and 250 mg at night. (Which will increase every two weeks until we get to her therapeutic level.) Her Enalapril twice a day- a BP medicine she’s been on since birth, her Lasix twice a day-for fluid retention and her daily asprin, of course. Not too bad for two weeks post op. We haven’t even had to give her any of her pain meds or even Tylenol. Such a big girl. McCanless has adjusted. Or not. I don’t think there was even a skip in her schedule. She hasn’t missed a beat and doesn’t seem to be phased whatsoever. She is amazing. I am too lucky to have such adaptive girls. They astonish me with their maturity. We should all be so understanding.
Mary Clare has a horrible skin rash on her chest. We called our NP and cardiologist last night and it seems to be a skin rash from all of the adhesives from bandages. We removed everything but her steri-strips from her “scarf,” which looks amazing so far. She always heals so quickly and so beautifully. Her little bruised and scarred body is slowly recovering. We also have another addition to our usual arsenal of meds for Mary Clare. We have our Diastat, of course, to stop seizures in an emergency (which means after 2 minutes for her). We’ve also added her O2 tank to her “goes everywhere with us backpack.” Her Oxygen saturation levels are still not as high as a healthy heart’s. They hover around high eighties and low nineties. Much better than before her Fontan, however! (They may improve even more after Dr. Bradley closes her fenestration in the cath lab in about a year.) So when MC has a seizure, because of her special heart, her O2 levels plummet, which is why she turns so blue/pale. It is strictly from her labored/unstable breathing during a seizure. For this reason, we’ll give her oxygen during a seizure. No biggie, just a precaution! Never hurts to have oxygen around for a heart kiddo, anyway!
Right now, as I sit at my computer desk, I have all of our doors open. I feel a great Spring breeze and hear a neighbor cutting grass. Mary Clare is dozing on my bed and McCanless is with Mimi. Mimi was her substitute teacher today, much to her excitement. I’m sure they are enjoying an after school ice cream cone or treat.
I’m sure I’ll soon get back into the habit of rolling my eyes at laundry, yard work, or all of my daily tasks and errands soon. But right now at this moment, everything is just as it should be. My washer has not stopped since we returned from Charleston, our yard was hit by a horrendous hail storm the day before we returned, and I have not been to the grocery store yet. Everything is perfect. We are all home and healthy.
Summer is just around the corner and the girls are getting excited about picnics by the pool, frequent beach trips and of course, our promised trip to Disney World. Life could not get any better.
Fontan Day 15:
1:25 PM After our eventful morning yesterday, we felt confident that we would meet with neurology today, possibly have another 24 hour EEG on Mary Clare, get an official game plan together for her seizures and be on our way. In fact, we had already begun her “sprinkle” seizure medication routine last night. Depakote, her seizure medicine, comes in a pill. I open the pill and use the sprinkles on ice cream, icing, chocolate syrup, anything really, twice a day. We were to begin a low dose morning and night for two weeks, review, and continue to up her dose every two weeks until her appropriate therapeutic dose was given regularly.
After a long night of feeling Mary Clare toss and turn, I finally asked the nurse to give her oxycodone for pain. The seizure yesterday seemed to have her chest and back very sore. She woke up rather early around 7:30 AM, which is unusual for her and was very talkative and in a great mood. I was chatting with her nurse and MC got down off of her bed to come sit in my lap. I heard her make a “Uh” with a tick. (Something I’ve been noticing and noting for about two months now.) I mentioned it to her nurse, just to verify that she saw it as well, and immediately Mary Clare began to seize again. My heart dropped, but I slowly carried her stiff and jerking body back to her bed and watched her writhe, gasp and turn blue once again.
I have seen her have grand mal seizures four times now. I wouldn’t say that I’m getting used to seeing her tiny body have a seizure, but I react very differently from the very first time she had one. I know when she is seizing and although my mind is screaming and panicking, my body does exactly what needs to be done. As I sit and watch what no mother should ever see, I know I’m being held. Watching her have a seizure is heinous, to be honest. There is absolutely nothing you can do other than watch and keep her safe. I just hold her head and talk to her. I don’t know if she hears me. Probably not, but just in case, I want her to know I’m there with her. When all is said and done and the eternal two minutes or so is over, I look back and know that there is no way I could do this alone. Just as I am there with her, He is there with us. Mel and I both certainly have a peace throughout it all that even astonishes us.
We met at length with her cardiology team and Dr. Turner, our neurologist, and his team. We feel confident that they have the best “game plan” in place. (We just had to jump start it because she had two seizures within 24 hours.) Her emergency plan will be adjusted because of her special heart, but we will continue on with her original med plan. Mary Clare is being given her full dose of Depakote through IV now and we will continue with her daily dose “sprinkles” twice a day. We have been assured that her heart can handle this and from her heart’s point of view, all is well. How amazing.
Fontan Day 14:
5:07 PM This post was intended to be a photo of the three of us on our front porch. We were discharged this morning and were looking forward to surprising McCanless at home this evening. We got the clear from cardiology after chest tubes were pulled and her echo was clear. We had a follow up cardio clinic appointment set for Tuesday, discharge instructions and the car packed and ready to go. We took photos with our nurses and hit the road around 11 AM. It felt so nice to be in the car with Mary Clare and heading home. The sun was shining beautifully, so we decided to celebrate and enjoy brunch outside at one of our local favorites, Fleet Landing.
The warm breeze blew her blonde ponytails and she watched dolphins dance in the ocean. She crawled up into my lap to take a rest, I thought. Moments later, Mel noticed her seizing. The events that happened next were no short of a nightmare for both of us. She stiffened and seemed to be in pain, which made Mel think it was her heart. We realized quickly it was a seizure and within minutes, a nurse, a doctor and paramedic who all just happened to be at Fleet Landing from separate parties were at her side, checking her pulse and her chest for breaths and calling 911. Her convulsions stopped after about 2 minutes and she lay on her side while bystanders crowded. She wasn’t breathing and grew pale white with silver blue lips. Time stood still. I just knew she was gone.
Mel was already on the phone with our cardiologist and we were told to go straight back up to 8D. We refused the ambulance so we could skip the ER. We left Fleet Landing after she slowly gained consciousness. In the ambulance leads had been placed, O2 and blood sugar checked. She was stable enough for the drive back to MUSC. It’s funny how your brain continues to work even when all you want to do is concentrate on one thing. As I held her in my arms in the back of our car, I noticed everyone on the street. Most were tourists enjoying the warm, sunny day in beautiful Charleston. I couldn’t help but notice their colorful clothing, big sun hats and cameras. I imagined they were shopping and chatting about the rich history of the city. Couldn’t they see that I was devastated? Couldn’t they tell that Mel was driving like a mad man to get our baby back to the safest place for her? Everything was in slow motion.
We are back in our room now, Mary Clare is sleeping (which is typical after a seizure) and we’ve already talked to two neurologists on-call , her surgeon, Dr. Bradley, and one of her cardiologists. Depakote, a daily medication to prevent her seizures is a must at this point. It will be a slow process to get her dosage/amounts adjusted for her, but we’ll begin tonight with her first dose at 9:00 PM. At least we have a plan for now. Soon she will wake up and not remember any of this. She may wonder why we are back at MUSC.
Her medical team strongly feels that her seizures have nothing to do with her heart. She has Hypoplastic Left Heart Syndrome. She has Epilepsy. Her heart is fine. (It’s just half sized.) Her brain is fine. (It just likes to have seizures.) She’s on daily asprin and meds for her little heart, and now she will be on daily meds for her little brain. God just decided to give me a wonderfully complicated, high maintenance baby girl. (Good thing He gave me Mel to learn how to deal.)
Fontan Day 13:
2:30 PM It’s a lazy Saturday on 8D. It’s always slow on the weekends at MUSC. The hustle and bustle of students, visitors and medical staff slows way down. Starbucks even closes. Mary Clare has had a great morning. We visited the Atrium, had a yummy chicken noodle soup lunch and are now watching Tinkerbell on the Ipad. Mel is downtown with a friend and it’s quiet, exactly what I was hoping for this Saturday. We may take a nap and head outside later on today. I’m thrilled to say there isn’t much new to report!
Finding music
in unusual places
like chicken noodle soup bowls, juice glasses and sippy cups.
8:00 PM Mary Clare and Mel are relaxing in the bed watching Tinkerbell for the third time today. We’ve had such a nice day. Mary Clare has even had fun playing dress-up with her new Tinkerbell costume that Daddy bought her downtown today. Mel talked to McCanless this afternoon and she is certainly having a big weekend. She spent the night with “Nonnie” and “Bubba” and Kate last night. They went out to dinner and to see the movie, Soul Surfer. Today, Mimi took her to Columbia to spend the night with Aunt Liz and Uncle Robert. I just received two photos from them. One photo was of McCanless riding with the top down of convertible and another was a photo of her first pair of shoes from Coplon’s. Yikes. I miss her terribly, but I know she’s in great hands and having a ball!
Notice anything?
Life on 8D
Artwork by Mary Clare, signs from our fun nurses who don’t allow boys, and other signs from nurses who know Daddy too well!
Dirty hands and fingernails from painting.
Prizes and treats everyday for taking meds!
Beautiful princess nurses who love to play!
Late night rides in strollers waiting for chest x-rays.
Fontan Day 12:
1:47 PM Mary Clare’s fluid levels from both chest tubes have been decreasing every single day. Our cardiologist told us to expect a spike, trying not to get us too terribly excited and hopeful, but so far, little miss has proven him wrong! She had a chest x-ray this morning and a visit to the Atrium and after a cheese pizza lunch is now soundly sleeping in her new Ariel PJ’s from Ms. Rebecca. I’m sitting in our room with the constant bubbling sound escaping from her fluid collection chambers and Mel’s on his phone talking “city” stuff. It’s a relaxing day. We ordered take-out from a great sandwich shop downtown, Bubba Slyes Deli, and treated a few of our amazing nurses. Later, we’ll head back to the Atrium, I’m sure and continue with our low-key day.
5:45 PM Guess what’s missing…
One chest tube, pacing wires and a central IV!
7:00 PM While I’m thrilled that my baby girl is one step closer to home, my heart aches at the thought of what she went through today to make that happen. She is the strongest little fighter I know. I’ve always been with her through every medical procedure that I’ve been able to attend. Even when I’ve been asked to step aside, I always let them know that I can handle it and I always stay. I’ve explained to Mel that if she has to endure it, I feel the very least I can do is be there with her. Mary Clare likes to know what’s going on. I try to explain beforehand what’s going to happen and how. She’s a smart little one and you can’t fool her, so I’ve always stayed.
Today, I was told that she would do much better without me there. Ultimately, it was my call, but I wanted to do what was best for her so let her go without me for the first time. MC went with her nurses and met the team that would remove her central IV line in her neck, her pacing wires and one chest tube. She was given Morphine and the procedure began in the Procedure Room down the hall on our unit. As soon as the door shut, I wished I was there with her. I felt like I was being a coward. I hated it. As I sat in our “No Boys Allowed” room with Mel in silence, listening to our baby girl scream, so many thoughts raced through my mind. Why am I allowing her endure all of this? Why should a three-year-old know this kind of pain? And if I’m being totally honest, did we really make the right decision to have the three staged surgeries? It was our decision to take the risk and our decision to put her through this. I was angry at myself that it was her on the table at that moment and not me. If I could exchange hearts with her, I would do it in a moment, without a doubt.
And the inevitable question, what’s in her future?
I try not to go there. I try to appreciate every single moment that we have, but I’m a mother. Every mother dreams of her daughter’s first date, magical wedding day and seeing her become a mother. Dare I wish for these moments for her?
It’s at times like these that I have to stop and be thankful for the moments we have shared. We have so many magical memories already and for that I am forever grateful. I can only hope and pray that she doesn’t remember all of this, one small window in her third year of life. None of us are promised tomorrow, so yes, I will wish sparkly pink prom dresses and a beautiful wedding gown and babies for her. I will laugh at her eye rolls and pappi obsession and love of all things Pinkalicious right now. I will embrace her special half heart and thank God that he blessed me with such a miracle. I will thank God for today.
Fontan Day 11: Pink, I said. Pink! Pink! Pink!
2:00 We have quite a busy girl these days! She’s napping from a great morning of costume changes, lunch outside and lots of Pinkalicious surprises! Mel came back into town last night after a couple of days “catching up” at home. He visited with McCanless one last time on his way out of town and we all “Face Talked” on our phones. (We could see each other via my iPhone and Mel’s Iphone) It was so great to see her and let her see that her baby sister is doing so well. Mary Clare’s chest tubes are draining quite nicely and her trend continues to be on a steady downward slope! Yay! Her cardiologist is convinced that we’ll have one more day of an increase in fluids, but so far, she’s proving him wrong!! She gets stronger everyday and seems to be feeling much better. Last night, we visited the Atrium and she painted her hands and arms blue. I’m beginning to see more and more of my “old” MC shining through!
We had several visitors yesterday. Ms. Reagan brought pink cupcakes, pink icing and pink sprinkles and we had a cupcake decorating party. Sprinkles were everywhere. Aunt Kacy, Aunt Liz and Uncle Robert entertained us too! Normalcy is setting in, finally! Unfortunately, exhaustion is too.
Mel brought with him a car full of pink goodies and pink treats from friends and family, including a Pinkalicious cake!
Sylvia’s Cakes in Lancaster sent MC a Perfectly Pink Pinkalicious cake and cupcakes! So yummy!
Lunch at Halo across from the hospital. Collection chamber boxes are in the back of the stroller.
Watching “Annie” on the Ipad. Thanks Aunt Liz and Uncle RahRah!
Tuckered out in her beautiful “Annabelle Bow” after our morning out!
We were finally able to wash MC’s hair tonight! (She’s had sticky EEG hair for almost a week now.) I held her back in her bed and he used cups of water over a basin. It was tough trying to support her without hurting her back or chest or get tangled up in all of her wires, lines, tubes, and big fluid boxes, but we did it! She thoroughly enjoyed it and closed her eyes as we scrubbed it and poured warm water over her blonde locks.
Happy 1 week Fonanniversary, MC!
6:00 AM One week ago today at this moment, I was handing over MC to her team of docs. It’s amazing how far she has come and what she can do one week post op. We had a fun afternoon yesterday with a visits from Aunt Kacy and a few friends. Yesterday was the first day MC has been around another child and I think it was great for her. I’m anxious to get McCanless here to visit her baby sister. I know they will both love to see each other.
MC started off her day pretty slowly. She was in no mood to talk to her cardiology team or Dr. Bradley, her surgeon. She slept in and lounged around most of the morning and didn’t even want to head to the Atrium for a morning visit like we usually do. We took a walk around the hospital and watched Nemo for a bit. After lunch, I made her get up and we went to the Atrium. She painted and played for a while once we were there. Later on, her nurse changed the bandages on her chest, which was not fun, but she had a great afternoon playing with Parker, my friend, Lee’s 7-year-0ld. They laughed and giggled and he even painted her toenails. It was amazing to see how happy she was just being around another child.
Her nurse came in this morning and checked her 24 hour fluid output from her chest tubes. Her output is still somewhat high. Her left tube output was 115 mls and her right tube output was 150 mls. We’ll get there.
She continues to be a bear with taking her oral meds. She’s just sick of them. I can’t blame her, though. She still doesn’t have much of an appetite, although she did chow down on a handful of Coco Puffs yesterday. I’m hoping today she will want to eat more, get her meds down (and keep them down) and have enough energy to make it to the playroom. Yesterday, a new neighbor arrived, a HLHS baby girl. It was great talking to her family and being able to show them how great MC is doing. As I talked to her mom about feeds, tummy issues and sleeping habits, the memories of her very first surgery came flooding back. It seemed like an eternity away until I really started talking about it. It still amazes me how much my baby girl has been through. No wonder she’s so sassy!
Parker painting MC’s toenails yesterday!
7:33 AM The Princess is still sleeping soundly and I’ve enjoyed watching the sun rise on the Atrium. It’s truly a lovely view, especially for my sweet girl who lives to visit the magical playroom everyday. I snapped a few photos and thought I’d share. On 8D, parents are required to stay with the children as primary care givers. (Not that I would be anywhere else anyway.) We do have a fold out chair that acts as a twin bed at night; however, I opt to sleep right in the bed with Mary Clare. She loves to “get in her spot” smushed right beside me.
Do you see sleeping beauty all bundled up?
10:30 AM Mary Clare just downed 5 meds so I’m letting her take a break with a bit of “Max and Ruby” on Nick. (I’m also giving myself a mental break after that ordeal.) Otherwise, she’s had a slow start today. Our plan was to hit the Atrium at 10, when it first opens, but the docs have not rounded yet, so we’re waiting on them. It’s amazing how full our days actually are. We are never just sitting around. We have appointments, and meetings with various docs, nurses schedule various events (dressing changes/IV meds/ check-ins) and we always have Mary Clare “events.” I should have known that Mary Clare would wait to be plugged into an IV pole, with two chest tubes and collection chambers, and wireless telemetry leads to refuse to go potty in a pull up. I’ve waited two years to really try to potty train her because I just knew it would be an ordeal to be in panties while in the hospital. Or in the least, I thought she would revert BACK to pull-ups-so I waited. This week, though she is as potty trained as it gets, even through the night. Dry as a bone. My children are as hard headed and head strong as they come. Shall we take a moment to pray for my patience?
Have I mentioned how blown away by all of the love and support we have received? I have been amazed at the number of people who love our baby girl and pray for her everyday. I just read an eNewsletter from Thomas Hart and saw that the student body has raised $1,351.00 so far for the American Heart Association in honor of MC. They have been selling buttons with her photo and “Pinkalicious” on them, of course! So amazing. I also have hundreds of photos of MC fans wearing pink overfilling my inbox. We have seen photos of friends, students, co-workers, strangers, store owners, pets, people from the East coast to the West coast all donning their pink for MC. We have photos of pink balloons, pink ribbons and pink decorations from everywhere on store fronts and houses! My heart also overfills with happiness and gratitude. I can’t wait to show her the photos one day and tell her of the Day of Pink that was just for her! Pinkalicious author, Victoria Kann, also contacted us and sent Mary Clare a Pinkalicious care package with Pinkalicious dolls and signed books. How amazing is that? We are blessed beyond measure. Thanks be to God!
Fontan Day 9: Post Op Day 6
7: 50 AM Little Miss is sleeping soundly, so I thought I’d take a moment to update. (It’s getting harder now that she is mostly awake during the day.) Yesterday, we had an amazing day! We really enjoyed getting out in the sun and playing in the Atrium, but I think it may have been tough on Mary Clare. She certainly wanted to get up and go. Her mind is so ready to tackle the world, but her little body just can’t handle it all yet. She still doesn’t have much of an appetite and has been vomiting. (Usually after she takes her meds.) She’s so funny and always wants to be in a shirt and a top. She insisted on dressing in “real clothes and shoes” yesterday for our outing.
She also stood up and walked a bit at the train table in the Atrium and we even got her in the tub yesterday afternoon. (Finally going to the potty thanks to an enema-which resulted in a tub bath.) It was a quite an event getting her to and from the tub. Mel had left about an hour prior, so it was just me and her nurse wheeling her IV pole, tube boxes, and lines and inching our way to the bathroom with a naked MC. She was so happy to be taking a bath, but demanded her Barbie with the swim suit! She sat for a few minutes and played with her Barbie as her nurse and I hovered over her with her gear. I got her all cleaned up and she crashed within about 2 minutes of being in her clean bed and clean jammies around 6:30 PM. She woke up at 11PM and we sat in bed munching on ice and watching late night television and Face Talked with Daddy on the Iphone.
Her nurse had to change the dressing on her central line in her neck yesterday, which is surgically sutured. (Quite an experience.) And when she finished, Mary Clare looked up at me in all of her bandages and lines and said, “But Mommy, I’m not beautiful like this.”
I had to explain that all of the scars on her tiny body were beautiful examples of all that she has accomplished.
I finally spoke to my 7-year-old teenager yesterday. She finally decided she wanted to take time to talk to her mom. Mel went home yesterday to check on the house, work a bit and go to his council meeting tonight, so he surprised McCanless after school! They went on a date to Bow Thai and called me from there. She already sounds so much older. Mimi is keeping her involved in all of her after school activities and keeping her busy! Of course everyone at home is keeping close eyes on her, spoiling her, I’m sure. She has always amazed me with her maturity. I’m so thankful she understands and realizes why I have to be away from her right now. I thank God everyday for my many blessings.
Fontan Day 8: Post Op Day 5
2:00 Mary Clare is resting right now and Mel just left to go home for a few days, so I’m updating early today. We’ve had a great day so far. We were encouraged to get Mary Clare up and moving. It helps get the fluid out of her chest and into her two bubbling boxes that go with her everywhere. All of the fluid coming off of her chest is closely monitored. One box for her right tube and one box for her left tube. Her fluid output increased yesterday and it still up today, but that’s to be expected. Her numbers should go up and down, we just hope the trend is on a downward slope for the most part. We’ll get there. It is a gorgeous day in Charleston and very warm. It was great to get out of the hospital and enjoy the sun. It’s amazing how uplifting a stroll in the “real world” can be. We even sat outside at a little cafe on the MUSC campus and had a quick lunch. Mary Clare sat in her wagon in the sunlight with her wireless monitor and boxes.
Mary Clare still has pretty bad back pain, but really only complains of it when we have to move her. She looks like a little old lady when I have to pick her up. She keeps her back stiff and holds on to my neck. It’s quite an ordeal to get anywhere, even across the room, but it’s necessary and certainly worth it. She still refuses to go to the potty, but we are working on ways to help get that under control. We had a meeting with her neuro team today and had a few questions answered regarding her epilepsy. They feel she has a genetic predisposition to have seizures, which means she would have had them with our without the heart condition. They know this because her seizures are generalized; her whole brain is involved, not just one area of the brain. Her neuro team will is watching her closely and will probably do another EEG before we leave. Mel and I feel that if her seizures are as few and far between as they have been at home we’ll continue to just monitor her and not go forward with the anti-seizure meds. We love her nuero docs, who aren’t pushing the meds, so we feel good about this decision. It is our understanding that the combination of the stress/trauma her little body has just gone through plus her predisposition to have seizures just raised her threshold to have seizures, which caused the increase in seizure-type activity. (Much like a Febrile seizure, when a child has fever.) We know she is prone to seizures, we just have to know how to react when she has one and just realize that sometimes she may be more likely to have them than other times.
She loves the underwater sea theme of the hospital. One of her favorite things to do is go to the first floor and see the saltwater aquarium. We’ve found Nemo and Dory in a tank with the Easter bunny! She can sit and watch the tank forever. Right now, we are in our room watching Finding Nemo and taking a rest from our outside time and hospital stroll. The Children’s Atrium opened at 2:00, so we’ll soon head down there for another try today. As always, we have met amazing families and babies who are defying the odds and are fighting with everything they have to survive. It is truly humbling to see. We live such an amazing life and have an amazing little girl. We are so fortunate to have so many friends and family caring for us and praying for her everyday. God has certainly blessed us in so very many ways.
Fontan Day 7
7:30 PM Another day down.
Mary Clare had a very tough day yesterday. She refused to take her oral pain meds, and wasn’t on IV pain medication. She hasn’t complained at all of her chest, as I assumed. She has been having severe back pain. We’ve ruled out several ideas, but have really not determined the exact reason. We spoke to a surgeon on her team and he seemed to think it had to do with “entry of the chest cavity.” Basically, how her little rib cage was ripped apart and bruised. So she has been given Toradol, which should help if it’s muscle pain. Last night, she threw up every time her nurse tried to give her meds, so we’ve started her on meds for nausea. Today has been better and it’s not as much of a struggle to get them down. (She’s a stubborned little one!) She has also learned that if she says she doesn’t hurt (even when she does), the nurses and doctors don’t touch her and she doesn’t have to take medicine, but we are getting there. One baby step at a time.
Today, she has been awake more and has been happier. We tried to play in the Atrium, the children’s play center. We unplugged her, piled her into her transport wagon and wheeled her down stuffed with blankets, pillows and all of her necessary gear. She was so excited but just couldn’t muster up enough energy to do much of anything. She wanted to play so badly, but it was simply too painful to maneuver her little body. We painted and walked around and stared up at the colorful kites and basked in the sunlight of the Atrium windows. After about 20 minutes, she was frustrated and in tears, so we headed back up. She wanted to sit quietly in her wagon for a while once we were back in our room. The quiet, and stillness seemed to calm her. It saddens me when I see her sitting quietly like that, just staring at the wall or into space. She seems to know that her body needs time to heal. She understands all of this somehow.
She also ate for the first time tonight. Cheese pizza! She just hasn’t had an appetite at all. Not even the bag full of pink candy from Uncle Robert enticed her. As I type this, she is watching Tangled for the second time today and I’m hoping and praying that she will go to the potty. If not, at 8PM, they have to catheterize her. Although we seem to be having a few bumps in the road, she has amazed me with her determination and stamina. She is such an amazing little girl.
10:00 PM So, Mary Clare and Mel are in bed watching Tangled for the third time today and guess what? MC went to the potty. (She decided to go just as the nurse was walking down the hall with her catheterization “tools” ready to get started. Nurse Kyra smiled when she heard the news and gladly returned them. We all cheered and “high fived” Ariel. Definitely a great ending to our day! Mary Clare has also been taking her oral meds like a champ. (Well not quite like a champ, but we’re getting them-and keeping them-down-so that means she’s a champ in our book.) Goals for MC tomorrow: taking another trip to the Atrium (actually nurses orders-the movement helps keep the fluid moving), talking all oral meds, going to the potty and eating a little more. Baby steps. I’ll probably need help remembering baby steps when we try to get our three-year-old back to “normal” when we get home. I have a feeling it may take baby steps to reverse the effects of all of this attention “Ariel” is receiving, but she deserves every single bit of it!
Fontan Day 5: PCICU Friday
Noon: A case is “rolling” so I”m updating. MC is sleeping now, and I just watched a family pray and thank God for Dr. Bradley’s healing hands on their own child, a 12-month-old baby boy with an AV Septal defect. Amazing.
Last night, I went back to our room about 11 p.m. and slept. I just knew that I would wake up and go back sooner than I did, but I didn’t move until my phone alarm went off at 6 a.m. I showered and headed back to PCICU to relieve Mel around 7 a.m. He stayed with her all night. We both just didn’t want her to wake up and not understand where she was or not know where we were. Thankfully, she has not really been aware of what’s going on much. She is in and out and very groggy. She was in so much pain last night, but would not take her meds. She did not want anything to do with taking them orally, so the only relief she has been receiving is through her Morphine IV, occasionally. The problem with that, is she is itching terribly. She has been given Benadryl for the itch, but I’m just praying that she will soon trust us enough to take her Oxycodone and Tylenol! (Oral pain medicine.) They are pulling her central chest drain tube, and IV to her heart now and will remove a few lines. She is draining a ton through her three tubes now. We may be able to go to the PC Step Down unit, 8D today, which is earlier than I expected. She will keep the line in her neck and arm and her two chest drain tubes. She is in a private “area” glass room in PCICU now, but we can’t actually stay with her. Once we move up to 8D, we will both be able to stay with her.
I’m very concerned with her seizure activity. Yesterday, she was having occasional, quick loud breaths./shout outs. I’ve noticed she’s had them for a while, even before surgery, but they were very few and far between. Maybe a few times a week. Usually at bedtime, just before she fell asleep. She had about 10-15 yesterday with an occasional “stare” episode. Last night, I read Pinkalicious to her and she had what I know was a seizure. She had the most bizarre facial expressions, ones that I have learned only happen with one of her seizures. She was unresponsive for a minute or so, then returned her interest to her book. Today, they are more pronounced and are happening pretty often. The “shout outs/yells” are longer and her blank stares are longer. Thankfully, Dr. Turner has ordered an EEG to read her little brain waves and get to the bottom of it all. I’m pretty sure that there isn’t much that can be done, I’ll just be glad to get him, the expert, involved.
It has been a difficult day for me. As a mom, I want her to respond to me and I want to be able to comfort her. Right now, for the brief moments she is awake, she is very angry. It almost makes me happy to see her feisty little spirit, even diluted and momentary, but my heart breaks because I can’t fix everything. She woke up for a moment earlier and looked up at her beautiful young nurse with a long blonde ponytail and smiled. When the nurse talked to her in her sweet voice, Mary Clare asked her if she was Cinderella. I’m hoping and praying to God that she is dreaming of beautiful princesses and magical fairy tales and will remember this as a quick visit to see her Cinderella nurse.
4:15 Another “case rolling”…Great news to report! Dr. Turner came down with a team from Neurology. He is amazing! After talking to us about her seizureish activity, they ordered a 24 hour EEG. If she shows enough patterns/activity to determine exactly what’s going on, it may not have to be that long. Unfortunately, we have to remain in PCICU until the EEG is complete. (Which means moving to the step down unit, 8D, is postponed a bit.) I’m completely fine with that, as long as we are getting down to the bottom of these seizures. Dr. Turner seems to think they may be myoclonic seizures. We’ll see.
Around 12:30, they gave her IV morphine and Versed to to keep her quiet while Dr. Bradley removed her central tube and IV. She also had one IV removed in her little hand. That leaves one on the opposite side of that same hand, one in her neck, two drain tubes and pacing wires, telemetry leads, pulse ox and oxygen. We’re getting there! She is in much better spirits this afternoon and even watched Happy Feet. Her chest pain seems to have lessened. She has even rolled on her side a few times to change positions and get comfy. Right now they are placing her EEG lines in her hair and we were told they were more “permanent” this time. (Last time sticky gel was used to keep them in place for an hour or so.) I’m hoping Ariel will have hair left after this. Actually, it may work out well. We’ll just have to buy a red wig.
Fontan Day 4: ICU Thursday
3:20 Mel and I slept for a few hours last night and were back in the PCICU bright early to see our Pinkalicious girl today. I knew today would be a difficult day for her. She is slowly but surely waking up and hating everything that is going on. Her three chest tubes are draining nicely and appropriately. She is on lasix, to help with fluid, but her eyes are still a little puffy. She hasn’t opened her eyes much, but has spoken occasionally. She told me she wanted to wear clothes, which is out of the question right now, so I tucked her blanket around her and told her she looked beautiful. She said she was “stuck.” I guess all of the lines and tubes have her feeling trapped, too. She is still on various drips, down to about 7 at this point. (Various ones for blood pressure, pain, etc.) Her nurse stopped her Precedex, the med that makes her sleepy and started her IV Toradol (Similar to ibuprofen.) Just now, a case was “rolling,” which is ICU talk for “new kid coming in,” so we were kicked out temporarily. Although still on oxygen, her O2 sats are running in the low 90’s and she’s still pink. She has been sipping on her juice all day little by little and is tolerating that well. A nurse asked, “She is three, correct?” Mary Clare, eyes still closed, said, “I’m not three. I am four.” Her voice is a raspy whisper, but she still has her spunk.
I’m convinced that she is having seizure “activity.” I want to call Dr. Turner in pediatric neurology and just let him know my thoughts. Not that anything can be done at this point. I just want to talk to him. I’m afraid that the trauma of surgery is causing her little brain to have seizures.
We laughed this morning after we called around 6 a.m. to check on her. Her night shift nurse told us she created a monster. She explained that after learning of Mary Clare’s great fondness of her green pappy, she just knew that she would love the “Sweet Ease,” which is a sugary syrup that nurses dip pacifiers in to soothe infants. Three years ago, as an infant, MC would have clear crust all around her mouth and chin from so much “Sweet Ease.” Turns out, she still LOVES it. The nurse said she begged for “sugar pappy” all night! I laughed but had to explain that she didn’t create our candy monster that we did that a long time ago!
All and all it has been a long day for us, but we know it is even more difficult for our sweet baby girl. We are so thankful for her progress thus far and hope and pray that she continues to be strong.
Fontan Day 3: Operation Day Wednesday
9:30 a.m. We got our wake-up call bright and early this morning at 4 a.m., and jumped out of bed. Mary Clare was her usual “non-morning” self, so I just left her in her purple heart night gown and wrapped her up in her blanket as we loaded up once again. We arrived at surgical check-in at 5:30. After vitals check, she was given pink Versed. This is an oral drug that is given to children to make the “hand off” easier. By 6, she was loopy eyed and playing Ariel with the nurses. They placed a pink flower surgical cap on her head and she asked me to go with her into surgery. When I told her I’d see her in a few minutes, she smiled and took off with the nurse. As we left the holding area, I shot a glance through the double doors and saw about 7 blue scrubbed people walking with her. This image is burned into my memory. For some reason, it’s comforting. I know everyone that is here, is on our side. I was assured this when I was walking to get Starbucks downstairs, I saw a familiar face and made small talk. The doc beside my friend, asked me if I was the mom of the cute blonde that just went back. He explained that he, having three daughters of his own, was singing Sleeping Beauty songs with her. When he called her Sleeping Beauty, she quickly corrected him, “I’m Ariel!” He said they hated to put her to sleep because she was so much fun. They assured me that once she was back “there” she would be given something by mask to breathe and fall asleep. She will not feel the sticks and pain of a central IV in her neck and several other PICC lines, peripheral lines, etc. Dr. Bradley began his work around 8 and we will be paged with updates on the hour. By now she should be on heart-lung bypass.
10:20 a.m. Just received our first page. Mary Clare is on heart/lung bypass and Dr. Bradley is “working away.” He explained yesterday that it will take a while to actually begin working on her heart. He must get through scar tissue from previous surgeries and procedures. I am blown away by the support we are feeling. So many people are wearing pink and sending Pinkalicious thoughts and prayers our way. We certainly have a loved little girl. We are so humbled and so very, very blessed. Thanks be to God.
1:20 Just received a page from PCICU. Dr. Bradley is finished and she is off of heart/lung bypass. It took a while to control bleeding, which is typical, and everything seems to be a bit ahead of schedule. Dr. Bradley will be coming into PCICU waiting room to talk to us soon. I’m anxious to see my baby girl with her brand new “scarf” (scar) She may not be awake/extubated today, but still, I’m ready to see her little face. We cannot believe all of the love and support we have received. What an amazing feeling knowing how many people are loving and praying for our sweet Pinkalicious Ariel. We are so thankful and blessed beyond measure.
3:40 Mel and I were able to go back into PCICU to see Mary Clare. We were only there for a few minutes before she started blinking and moving a bit. She is still heavily sedated and intubated, so they are certainly not ready for her to wake up. We tried to keep quiet as the nurse explained all of the meds they were administering. Somehow, she sensed that we were there. They sent us away. It broke my heart not to be able to hold her or talk to her. I feel like a weight has been lifted off of my shoulders, however, I know the long road to recovery has only begun.
7:47 p.m. It has been a long afternoon. The early part of the day seemed to fly by, for some reason, but this afternoon has been difficult. Mel and I went back to see Mary Clare again around 5:30 and once again, we were asked not to speak loudly, as she was responding to our voices. She was trying her hardest to fight over the ventilator, which is not what they wanted. They ran CPAP trials to determine if she could come off of the vent, but she wasn’t quite ready to breathe on her own. My body ached to hold her, to touch her. My mind is telling me I have to wait, to keep quiet, not to touch her, but I can almost hear my heart pounding, wanting so badly to grab her, smell her sweet scent and kiss her cheeks.
No mother wants to see her baby hurting. It is truly the most difficult part of this journey. Seeing her wrapped in tubes and lines breaks my heart. She has her wall of IV drips and bags behind her and has three large drain tubes peeking from under her covers. She has a central line in her neck and several IVs in her arms and legs. Her pacing wires are in her chest and, of course, the lines in her nose and her little taped mouth with her vent are very difficult to see on her perfect little face. I did notice that her little toes are not their usual blue. They are actually pinkish! She will be thrilled. Her toenails and fingernails are a pale pink.! (Still somewhat purplish, but not her typical dark gray blue!) It is amazing. Her stats were already in the low 90’s-upper 80’s! Still under all of those lines and wires is my little Pinkalicious Ariel! I can’t wait to see her open her big brown eyes.
Right now, I’m back in the waiting room. Mel is having a bite to eat with his family. They feel like she’s ready to be extubated, so they asked me to step out. Her nurse said she was doing beautifully, and once they extubate her, she’ll be breathing on her own! Her nurse also told me that she asked Mary Clare if she was in pain, and MC shook her head no. She also pointed to her tube, indicating that she wanted it out! That’s my girl, letting everyone know exactly what she wants.
I am utterly humbled by the outpouring of love and support and prayers we have received. Nothing I can ever say will be enough to express our gratitude. God is holding us and carrying us through this journey. It is truly a surreal experience. My heart is so full.
10:30 Mary Clare is extubated and sleeping. Her night shift nurse is amazing and said she was going to make sure Mary Clare would get a peaceful and painless night’s sleep, which is exactly what I was hoping to hear! Mary Clare was vaguely awake for a few moments after she was extubated. I was talking to the nurse about getting a paci to have for later and Mary Clare said, “Green Pappi” telling me to be sure to get her her favorite, a green one. Her nurse also said that immediately after extubation, my MC was telling them she did not like the tube. Apparently, it’s pretty rare that a patient talks so soon after a vent tube is removed. “She’s a talker, I can tell” was her nurse’s response. I can’t wait to hear that voice again tomorrow! Thanks be to God!
Look, pink lips!
Fontan Day 1: Heading to Charleston
I’m counting today because I woke up this morning, ready to tackle the day. I hit the ground running. For some reason, I feel like I’m more mentally ready to start this than I was three weeks ago. I held my breath all morning long, however, and have waited to pack because I think somewhere deep down, I thought that just maybe, I’d get another call from MUSC with a delay in game plan. It’s now 11 and I think I’ll pack.
It was Monday morning, March 7 around 9 that I got the call last time postponing Mary Clare’s Fontan. Maybe somewhere deep down I was hoping that it would be postponed forever.
It’s not. It’s here. And as much as mother can prepare to leave one baby behind and place her youngest baby in the hands of another, I think I’m ready.
Mel left for work to save the world in the few short hours he has left in Hartsville and I’ve got a mountain of laundry to do before I stuff our car with bags. It’s amazing what you think of at different moments preparing for such an extended leave of absence. I was hoping to plant a few ferns on the back deck, as I always do this time of year. (No such luck because of the rain today.) I ran to Wal-mart to purchase a new shower curtain liner, as I’ve been meaning to do this week. I have to drop off the girls’ Easter dresses for altering and monogramming and I cleaned out the Easter candy dish. I may go into the attic and pull out my Easter baskets and decorations to surprise McCanless when she visits our house with Mimi while we are away.
I have yet to pack.
Tonight we’ll check into our usual stay, and try to sleep. Tomorrow, bright and early, we’ll begin a day of pre-op for Mary Clare. We are here, yet again. Time is so relative. And so very, very precious.
Last week, Coker found us.
The girls and I were cruising along in the golf cart on a sunny afternoon. We saw a mass of blonde fur jumbled up on the water’s edge near a neighbor’s house and as we slowed to a stop to investigate, we realized there was a wet puppy barreling toward us. Before we knew it, she jumped onto our cart and she hasn’t left us since. I called all of our neighbors, called every vet in Hartsville, Facebooked her and even called the Humane Society. She’s ours. A blonde, fuzzy, Golden Retriever mix with a short tail, we call Coker. So today, while McCanless was at school, Mary Clare (who calls her Fuzzy) and I took her to the vet to make it official. After a thorough exam and all of her boosters, the vet looked up at me and said, “You have a special needs puppy here.”
What happened next, I will never be able to explain. Irony doesn’t even begin. Chance, perhaps, but I just can’t shake the feeling that Coker was certainly meant to be in our family. The vet went on to explain that we have a puppy with a CHD. “CHD stands for Congenital Heart Defect, which means she was born with her heart defect,” the vet explained as if I had never heard the words. She further explained that Coker has a very loud murmur, most likely an enlarged heart and she needs to see a specialist for an echo to determine her exact CHD. We could even feel her murmur on the outside of her chest. She rated her heart on a scale of 1 to 6, 6 being the most severe from what she could tell without an echo. She rated Coker’s CHD a 6. She referred us to an out-of-town specialist and told us that she would require heart surgery soon if we decided to take that route. Without the surgery, Coker will not live to be one. She mentioned low oxygen, but good color, possibly vomiting, aortic stenosis, etc.. It was almost as if I was in Charleston at MUSC for one of Mary Clare’s cardiology appointments.
She said that it would take a special family to care for her and that it was our decision to continue on to the veterinarian specialist or not. As I watched Mary Clare tug and pull on her leash and Coker gently nudging Mary Clare’s side playfully tickling her, I knew our decision. They share a friendship and bond that goes far beyond two little broken hearts.
This adorable heart quilt was made by my wonderful sister-in-law, Casey! Isn’t it amazing? She is so very thoughtful and such a crafty girl! What else is amazing, is the back of the quilt has the exact same sweet, pink, princess fabric that Keri from Heartfelt Couture used on Mary Clare’s hospital gown and pillow! She will be completely pinkaliciously coordinated for her hospital stay! I cannot thank you both enough for making my sweetheart smile!
Sometimes, I use my dining table chargers as paint pallets for the girls. (A quick spin in the dish washer and they’re clean! Works fabulously!) Last week, as I was putting away Mary Clare’s paint and brushes, I noticed her pallet. Obviously, she played in the paint and mixed all colors with her fingers. Not unusual. Typically, however, she mixes and mixes until the paint is gray. McCanless and I thought MC did a great job on the pallet, so she and I took photos…
Read Across America Day
Daddy was the 1st grade reader for Read Across America Day last week. (I know he had just as much fun as the kids.) He had them all laughing out loud and clowning around. He chose to read them Splat the Cat on the Ipad, of course, which was a huge hit. He’s a natural. Maybe Daddy will be a teacher in his next career!
The State of the City address by our very own Daddy (and Mayor)
I want to begin by thanking members of city council for being here tonight…
I must thank Senator Gerald Malloy and Representative Jay Lucas for always finding the time to come home and support their hometown. I thank Coker College for allowing us to use their beautiful facility—this is proof of a strengthening relationship, a bridge between the city and the campus. I also want to thank Sonoco, HilexPoly and Progress Energy for their continued support of our city, and, of course, my fellow Hartsville residents.
I think I should start by explaining why I felt the need to address the city. The Constitution says that from time to time a president will, “give information to Congress about the State of the Union, that he will recommend to their consideration such measures as he shall judge necessary and expedient.” I think this should also be true on a local level. I am an advocate of accountability and transparency of government. I was elected to lead and that gives me a responsibility to communicate the city’s agenda, to be open about its operations. I owe the community and I have an obligation to address concerns. I think it’s necessary to take time to review where we’ve been and what we’re working towards, to remind ourselves of the things that make us great and the reasons why Hartsville endures.
In the first few weeks of 2011 we have faced incredible challenges, but those challenges revealed our strength—our faith—in each other and in our community. We have seen tragedies and disasters, both natural and unnatural, and we have rallied to provide shelter, aid and compassion for our neighbors. In the first few weeks of the New Year I have witnessed an outpouring of love, people banding together during trials, quite literally, by fire, and like gold it has only made our values stronger. Odds are that if you are here you believe in something greater and more consequential than yourself, that you have a vision for Hartsville. By attending tonight, by taking an active interest in the state of your city, you have made a commitment to help realize that vision. You recognize that only together can we move forward. With a sincere and unified effort we can forge an even better place to live, work, study and raise our families.
I dream for Hartsville to be not just a flagship for Darlington County but a model for the entire state. When people get the opportunity to move to South Carolina I want them to choose us. Our city is a remarkable one and we have so much to be proud of. We are home to international and domestic corporations, some of the finest academic institutions in the southeast, a thriving fine arts community, one of the biggest Veteran memorials in the state, and a botanical garden larger than New York’s Central Park. We have the attractions, we have the resources, and we are marketable, but more important than that, we have committed people. Our town was founded by self-starters, motivated individuals who inspired and demanded action from those around them. There are those who continue that spirit, people who have volunteered countless hours of their time because they recognize Hartsville’s potential and because they are not content to just leave things as they are. I’m reminded of earlier this year, when an ice storm threatened to bring this city to a grinding halt I received a call from Scott Nelson.
He said, “I know the DOT won’t be able to make their way out here soon. Would you mind if I took my truck and started scraping Green Street?” That is the kind of initiative I’m referring to. Thanks to volunteers we were able to dig out this city and provide aid to those without power and electricity. We should follow our own example. We are go-getters. Hartsville is great but we can do even better.
Improving the city is accomplished by working together to change both the social and the physical landscape. We have made beautification a priority. Our Public Service department should be commended on their hard work and how well they have begun implementing plans to make our town more attractive. A few weeks ago City Council passed a nuisance ordinance that will prevent property owners from allowing their yards to grow wild with a gross amount of weeds, bushes and undergrowth. We have over 75 condemned houses slated for demolition starting in this summer. Hartsville has also received $400,000 in grant money from the EPA for the revitalization of former industrial and commercial sites.
Though we expect these measures to be met with some opposition I want to remind people that these actions will be taken to promote the general health, safety and welfare of all people of the city. Unkempt lots and abandoned buildings create fire hazards, provide venues for crime, and lessen the value of our homes. They are public eyesores and infringe on rights of others to have a safe and beautiful community. We also need to think of beautification in a broader sense, and do more to help the environment. This morning I met with Sonoco to discuss the creation of a city wide recycling initiative to keep Hartsville beautiful for our children and our children’s children.
Betterment also involves embracing new technologies and investing in the future. In the past year we have explored bold new solutions and the creation of a Hartsville fiber optic network. We have sought government grants to fund the implementation of a infrastructure that would allow the city to provide fast internet access, high-definition cable and a dependable phone service to our own citizens. In 2011 we will continue to pursue a vision of Hartsville that is fully equipped to compete in the twenty-first century. We have employed new technologies to upgrade the basic services of our city and improve our standard of living. Our Finance Department has implemented online bill pay which provides a faster, easier, way for us to pay our utilities. We received a $1.5 million grant for digital water meters that can be check wirelessly, increasing our efficiency and saving the city money. We have begun using Nixle, an online public safety system that allows citizens to receive emergency notices from the city via email or text message. Also, through the city website, the police department can share current neighborhood crime data with the CrimeReports system. These tech-initiatives strengthen education, encourage economic development, and enhance information services and public safety.
While on the issue of public safety I want to thank Chief Deputy Jerry Thompson who has done an excellent job serving as interim police chief. Under his direction we have seen a greater police presence: regular door-to-door patrols downtown, increased patrols around the city and checkpoints throughout. Our police department is working tirelessly to ensure that Hartsville is made safe. But our officers are most effective when working with the citizens they protect and serve. Earlier this year I was approached by Emory Waters who has moved back to Hartsville after 40 years of working with the FBI. He asked if he could volunteer his knowledge and experience to the city’s police force. A few months ago I received a call from a man with a wife and a newborn. He told me that drugs were being sold on his street and asked my advice about starting a community watch group. It is up to all of us, not just law enforcement, to lower the crime rate. We all need to work harder to take a proactive stance against crime. We are all members of this community; we need to look out for one another. A crime anywhere in Hartsville is a crime everywhere in Hartsville and just because you are not the victim does not make you any less responsible for doing the right thing. Many out of work often feel the pressure to turn towards a life of crime, and though it makes their actions no less condemnable we need to understand the correlation between increases in criminal behavior and increases in unemployment. In 2010 we saw the number of jobs in Darlington County shrink considerably and the competition for work in this area has become fierce. The destruction of the Agrium Plant, the loss of sixty jobs, was another blow. However, we should never lose hope. We should accept it as a challenge to find new ways to expand the job market for our citizens. I believe with uncompromising faith that our local economy will get better because of its entrepreneurial spirit. It starts with the small business owners. We are a city filled with passionate people, and by following that passion and capitalizing on their dreams, we create jobs right here in Hartsville. Our small businesses provide the city a selling point to bigger business and change the perceptions of what one can expect from a small southern town. Large companies will continue to invest in Hartsville after seeing what we have to offer—dozens of community owned and operated businesses that prove we are capable of sustainability.
However, with the realities of the current economy, I see no reason to make apologies for pursuing private dollars or state and federal money for the benefit of our city. Last year we were able to secure funds for over $400,000 worth of water improvement in south-Hartsville. Just last week we were notified that the fire department has received a grant of $95,000 which will be used to purchase better equipment and improve their exemplary level of service. In February, Sonoco announced that, as a part of their PULSE initiative, they would invest $5 million in Hartsville area schools. Along with a cooperative effort between Coker College, the Governor’s School of Science and Mathematics and Yale University’s Comer Project, this could put our education system in competition with the best in the state and give our children a better future. This year we’ve made a commitment to more actively seek outside funding for our city. We will be meeting with department heads to see what they need to do their job more effectively and develop grant making strategies. We also want to better publicize the recipients of those grants, their general approach and the reasons for applying. By doing this we hope to inspire others in Hartsville who have ideas for a program or initiative. If you believe that you might be able to address some area in our community which is lacking, seek every opportunity to fund your vision. Be more than a human being, be a human doing. Bring about the change you want to see.
We’re strengthening our staff with people who embody that drive. At the start of this year we hired a new City Manager, Natalie Zeigler, and she has already done an amazing job getting us refocused. We will of course appoint a new Chief of Police and continue the work being done to clean up our streets. We will be announcing a Special Projects Manager and create a Public Information Officer position to help better communicate our agenda to the people. The city is growing and we need the right kind of people to help facilitate that growth.
The state of the city is in progress. We are changing for the better, and though we have a lot of needs, we have an amazing amount of resources. We should never get discouraged. Margret Mead told us to, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” And that is true of us. We are small but we are committed to building a better Hartsville. Despite any and all of our differences we agree that Hartsville can be improved—we don’t give up on this city. By moving forward, together, towards that collective vision of a better Hartsville we can exceed the limits of our own expectations. I know that realizing that vision will at times be very difficult, but I believe our faith and our passion will be rewarded.
Thank you.
Mayor Presents State of the City address (By Philip Dunson, Published March 09, 2011)
HARTSVILLE–Mayor Mel Pennington addressed an audience of 329 people Monday on a wide range of topics, including achievements in education, crime, the economy and a potential city-wide recycling initiative in what was said to be Hartsville’s first ever State of the City address.
Throughout the 15-minute speech given inside the Watson Theatre of Coker College’s Elizabeth Boatwright Coker Performing Arts Center, the first-term mayor cited the community’s resiliency and compassion and urged its citizens to look toward the future.
“The state of the city is in progress,” said Pennington, dressed in Navy Blue suit and customary bow tie. “We are changing for the better, and though we have a lot of needs, we have an amazing amount of resources. We should never get discouraged. …Despite any and all of our differences we agree that Hartsville can be improved—we don’t give up on this city. By moving forward, together, towards that collective vision of a better Hartsville we can exceed the limits of our own expectations.”
Pennington, who was welcomed with a standing ovation after being introduced, referred to U.S. Constitution when explaining the reason for holding the address. He cited the president being required to give information to Congress in regards to the State of the Union and said this should also be true on a local level.
“I am an advocate of accountability and transparency of government,” said Pennington. “I was elected to lead and that gives me a responsibility to communicate the city’s agenda, to be open about its operations. I owe the community and I have an obligation to address concerns.”
The mayor went on to explain that the city has had a most eventful first few months of the year. In 2011 the city and its residents have already had to endure a highly publicized assault at a downtown business in which a person was assaulted and the store set on fire; the retirement of long-time Police Chief Tim Kemp; and a fire that severely damaged the Agrium Rainbow Operation fertilizer plant on Valentine’s Day.
“In the first few weeks of 2011 we have faced incredible challenges, but those challenges revealed our strength—our faith—in each other and in our community,” said Pennington. “We have seen tragedies and disasters, both natural and unnatural, and we have rallied to provide shelter, aid and compassion for our neighbors. In the first few weeks of the New Year I have witnessed an outpouring of love, people banding together during trials, quite literally, by fire, and like gold it has only made our values stronger.”
Pennington then addressed several areas in detail in which he said the city is working towards improving, including beautification and technology.
He cited the City Council passing a nuisance ordinance that will prevent property owners from allowing their yards to grow wild with a gross amount of weeds, bushes and undergrowth. He said the city has over 75 condemned houses slated for demolition starting in this summer and received $400,000 in grant money from the EPA for the revitalization of former industrial and commercial sites.
“Unkempt lots and abandoned buildings create fire hazards, provide venues for crime, and lessen the value of our homes,” said Pennington. “They are public eyesores and infringe on rights of others to have a safe and beautiful community.”
Pennington then said that he had met with Sonoco officials to discuss the creation of a city wide recycling initiative “to keep Hartsville beautiful for our children and our children’s children.”
“We also need to think of beautification in a broader sense, and do more to help the environment,” he said.
In the area of technology, Pennington said the city has explored the creation of a city-wide fiber opticnetwork.
“We have sought government grants to fund the implementation of an infrastructure that would allow the city to provide fast internet access, high-definition cable and a dependable phone service to our own citizens,”Pennington said.
He said city’s finance department has implemented online bill pay which provides a faster, easier, way to pay our utilities. Pennington then cited a $1.5 million grant the city recently received for digital water meters that can be checked wirelessly, increasing efficiency and saving the city money. He also mentioned the implementation of Nixle, an online public safety system that allows citizens to receive emergency notices from the city via email or text message.
The mayor recognized Darlington County Sheriff’s Department Chief Deputy Jerry Thompson, who is presently serving as the city’s interim police chief.
“Under his direction we have seen a greater police presence, including regular door-to-door patrols downtown, increased patrols around the city and checkpoints throughout,” Pennington said. “Our police department is working tirelessly to ensure that Hartsville is made safe.”
Pennington then said that he believes there may be a correlation between increases in criminal behavior and increases in unemployment.
“Many out of work often feel the pressure to turn towards a life of crime, and though it makes their actions no less condemnable we need to understand,” Pennington said.
On the subject of education, Pennington made reference to the recently announced PULSE initiative funded by $5 million from Sonoco. The initiative involves a cooperative effort between Coker College, the Governor’s School of Science and Mathematics and Yale University’s Comer Project.
“This could put our education system in competition with the best in the state and give our children a better future,” said Pennington.
Pennington said he sees many positive signs in regards to the city’s economy.
“I believe with uncompromising faith that our local economy will get better because of its entrepreneurial spirit,” he said. “We are a city filled with passionate people, and by following that passion and capitalizing on their dreams, we create jobs right here in Hartsville. Our small businesses provide the city a selling point to bigger business and change the perceptions of what one can expect from a small southern town. Large companies will continue to invest in Hartsville after seeing what we have to offer—dozens of community owned and operated businesses that prove we are capable of sustainability.”
Pennington said the city will continue to pursue private dollars or state and federal money. He said that in 2010 the city was able to secure funds for more than $400,000 for water improvement in South Hartsville. He said last week the city was notified that the fire department has received a grant tor $95,000 to purchase updated equipment.
“This year we’ve made a commitment to more actively seek outside funding for our city,” said Pennington. “We will be meeting with department heads to see what they need to do their job more effectively and develop grant making strategies. We also want to better publicize the recipients of those grants, their general approach and the reasons for applying. By doing this we hope to inspire others in Hartsville who have ideas for a program or initiative.”
Before closing the mayor recognized new City Manager Natalie Zeigler. He said that she “has already done an amazing job getting us refocused.”
He also said the city plans to announce the hiring of a special projects manager and create a public information officer position to help the city better communicate its agenda to the people.
Prior to giving the address, Pennington gave thanks to his wife and daughters for their support. He recognized city council members individually and thanked S.C. Sen. Gerald Malloy and S.C. Rep. Jay Lucas for their support of Hartsville. He thanked Coker College for the use of the theatre and said it was “proof of a strengthening relationship, a bridge between the city and the campus.”
The mayor also thanked Sonoco, HilexPoly and Progress Energy for “their continued support of our city.”
Pennington made it a point to thank Hartsville residents and asked for their support.
“Odds are that if you are here you believe in something greater and more consequential than yourself, that you have a vision for Hartsville,” Pennington said. “By attending tonight, by taking an active interest in the state of your city, you have made a commitment to help realize that vision. You recognize that only together can we move forward. With a sincere and unified effort we can forge an even better place to live, work, study and raise our children.”
EDITORIAL: Well done, Mr. Mayor (By Mary Kean SCNow.com)
In the short, yet most informative span of 15 minutes, Mayor Mel Pennington provided residents with a much-needed pep talk and offered them updates on the where the city stands on a number of issues.
Billed as Hartsville’s first-ever State of the City address, we hope that Monday’s speech in the Watson Theater will not be the last. In fact, we see it as a launching point for possibly holding bi-annual or quarterly events – either state of the city addresses or town hall meetings, in which the mayor can keep his constituents abreast of what the city and its leaders are doing.
Pennington’s address served precisely the purpose for which it was intended – to inform and motivate. The mayor and his staff put together a speech that touched on a wide array of topics, from crime and unemployment to education and the economy. It covered a large amount of ground in a short period of time, keeping the information concise and to the point.
Between his updates, Pennington interwove reminders of Hartville’s strong sense of community and its ability to sustain and withstand hardships.
“I have witnessed an outpouring of love, people banding together during trials, quite literally, by fire, and like gold it has only made our values stronger,” Pennington said after referring to the issues that have faced the city during the first few months of 2011.
The mayor convincingly pointed out that the city also has much reason to be proud. While crime and plant fires have drawn much attention to the community, so has the announcement of a $5 million initiative that will put the city at the forefront of our state’s education system. Our police chief may have retired after years of dedicated service, but we have a new city manager in Natalie Zeigler who appears to be the ideal person for the job.
There is no question that the beginning of 2011 has brought Hartsville more than its share of difficulties. We believe the mayor’s words will go a long way in assuring residents that municipal and state leaders are doing what they can to address and resolve any problems the city is facing.
We see nothing but positives coming from Monday’s speech. It provides yet another bridge of communication between the city’s leadership and its residents. Mayor Pennington and his staff deserve much credit for establishing what we hope will become a regular event – annual, biannual or quarterly – that will serve our city well.
I just received a call from Dr. Bradley’s office. Two precious heart babies need his care at the moment more so than my Mary Clare. After much deliberation they have decided to postpone her surgery. New Fontan date is March 30.
I’m terribly disappointed as we were mentally ready for this to be behind us, however, my heart aches for these two new heart families and knowing the road they face.
Nitty Gritty Late Night Ramblings…
It’s here. I’m in disbelief and somewhat on “auto-pilot” mode at this point. I’ve often told others that last month’s wait was more difficult for me than the more recent weeks. I’ve had my days of meltdowns, but for the most part, I’ve held it together by keeping very busy, planning and organizing. This is the point at which you should laugh.
It’s no secret that Mel nor I are big planners. He is naturally a whim kind-of guy and I’m just so “go with the flow” that neither of us get concerned over details. It works.
In fact, Mel scheduled Hartsville’s first ever, “State of the City” address, to which we will all attend, for tonight at 6PM, after which, we’ll pack up and head to Charleston. He scheduled the speech knowing that we would be at MUSC for pre-op the following day. He is speaking to the city of Hartsville at the Watson Theatre of the Elizabeth Boatwright Coker Performing Arts Center. Join us, if you will.
I’ve packed Mary Clare’s bags, and as I sit here tonight unable to sleep, I’m thinking of all I have to do tomorrow. I’m going to work for a couple of hours. I need to get the oil changed, and car cleaned. I have to pack. I’m not taking much. Lounge pants, tennis shoes, casual wear. It’s so ironic to me that soon I’ll be placing the life of my daughter literally in the hand of another, and I’m thinking of what sounds like a category in a beauty pageant. So petty. So minor. It’s also something that I’ve had a difficult time with lately. The insignificant. I’ve noticed other’s disappointments in children’s report card grades, anger over the trash truck spilling over a few pieces of trash on “their street,” or wrong orders at at restaurant, horns blowing because a pedestrian took too long. And while I know that what I may deem unimportant at this moment in time, may very well be significant to another, do all these truly matter in the grand scheme of things?
But I digress…
The details… We will leave for Charleston tonight after Mel’s State of the City address. Mel will probably pack after the address while Mary Clare and I wait in the car for him. (I’m not being sarcastic about this in the least. If you know Mel, you know I’m very serious. Mel never prepares a speech but for this important address, he started and finished it just tonight.) Mel called a friend last week to check on an apartment downtown that he has so graciously offered to us in the past. If it is available (we’ll find out today), we will begin our journey there. If the apartment is not available, we’ll most likely end up at the Courtyard Charleston Marriot, which is our usual stay.
While in Pediatric Cardiology ICU, parents are officially not allowed to stay with children. They kick you out for an hour at 7AM and 7PM for shift change and/or emergencies/children returning from surgery, but all other hours are fair game. I’m allowed to be with her, just not to “stay.” If I don’t feel I have easy access to her while staying downtown due to parking concerns/garage/travel distance, we’ll check into the Ronald McDonald house. It’s certainly not the Ritz, or the Marriot for that matter, but it’s walking distance from my precious Mary Clare. I would pitch a tent on the street to be closer to her, if I could. The RMH also gives me such a sense of belonging. In the past, when we have stayed at a hotel during Mary Clare’s procedures, it’s difficult to see “civilians” with their cameras and tour guides complaining about the pillows in their room or traffic. (I guess it goes back to the lack of compassion I have for those insignificant matters at moments like these.) I want to tell everyone I pass, “My little girl is in the hospital. I’m NOT here on vacation.” At the RMH, everyone is a parent away from home. Everyone has a child that is hurting. They get it.
Once Mary Clare is out of Pediatric Cardiology ICU (I’m hoping no longer than the first week), she will be transferred to 8D, the pediatric cardiology step-down unit. It was 7C when we were at MUSC in the past. They’ve moved and it’s bigger! We’ll be moving in with her there. I’ll sleep with her in her hospital bed and Mel will get the couch/futon. 8D is in the Children’s Hospital and just down from the Children’s Atrium, a gloriously sunny, play atruim for all of the children at MUSC Children’s. It’s tall walls and glass ceiling are filled with kites. You can watch clouds pass overhead and just feel the sunshine. It is amazing! I’m envisioning Mary Clare spending many days in the atrium.
McCanless is much more aware of what’s going on now than in the past. She was 3 1/2 and 4 when Mary Clare had her previous surgeries and now at age seven, she has a clearer understanding of what is about to happen. McCanless has always been a child that has maturity and compassion well beyond her years, and I can only hope that she will truly understand and forgive me one day. Mary Clare needs me and it rips my soul apart to have to leave McCanless behind yet again.
We have been told to prepare for a month-long stay, and our journey begins tomorrow at 9AM. We will check-in at MUSC general admission to begin a day of pre-op testing. Mel does a much better job of keeping everyone informed via twitter/facebook, but I’ll do my best. (I usually vent by writing senseless, rambling posts with little info. i.e., this post.)
Exactly what I needed…
It’s amazing how sometimes God gives you exactly what you need before you even knew you needed it.
This morning, as I began our Sunday morning rush (coffee, breakfast, dressing the girls, tidying up before heading to Sunday school at 9:30), Mel shouted out an invitation as he showered. He usually works on Sundays, so the girls’ team typically flies solo. I assumed today was like every other Sunday, so it surprised me. He was speaking at Hartsville Community Fellowship this morning and wanted us to attend. Speaking engagements for him are not unusual, but invitations for us are. (He loves to have us, it just usually doesn’t fit into our schedule or he forgets to tell me.)
Mel has such a natural knack for public speaking and I often forget about this jewel of a talent. He’s so charismatic, comfortable and at his best in front of a crowd. I guess with time, you seem to overlook those special qualities and talents in your spouse. I do, however, still find him to be one of the most intriguing and uniquely talented people I know. We have always had an amazing relationship. One that gets better with each passing year. One of his “traits” that I have not grown accustomed to is his uber spontaneity. I’m probably the most flexible person ever, but an invitation 5 minutes prior to an event is a stretch, even for me. I had no idea he was speaking this morning and no idea we would ultimately attend HCF together.
This is where God stepped in. Typically, I would have told Mel he should have told me about this before this morning and rambled on about how I love my own church dearly and I certainly wanted to be apart of the last service I would be attending in several weeks, etc., etc., etc. I would not have gone with Mel. Feeling guilty, nonetheless, but not going.
Today, the girls and I went with my husband.
Not only did I find a renewed attraction to the handsome, confident leader that he is, I was blown away by his sincerity. He is deeply committed to me and our family and because of that, he is committed to Hartsville. He spoke on behalf of the city and her direction. He made everyone laugh. He promised his all. He made everyone feel at home and safe. Exactly why I married him.
At the end of an amazing service, the congregation prayed for Mary Clare and our family. Mel was very emotional and for a brief moment, I was uncomfortable seeing him so vulnerable. It dawned on me then that we need each other. More now than ever before.
So many have asked us what we need, what we are most concerned about, what they can do for us. Today, I realized that we have exactly what we need in each other.
“Prayer for Mary Clare”
On Ash Wednesday, March 9, as we hand over our Mary Clare to the surgeons at MUSC and God, Thomas Hart Academy PTO will host a “Prayer for Mary Clare” in the cafeteria at 7:30 AM. Students, parents, teachers, family will gather in pink, pray and share pink donuts in her honor. She would be tickled pink herself.
I am humbled beyond measure and forever grateful.
Brace Face!
I was in disbelief last month when our dentist told us it was time to visit an orthodontist. I thought surely we’d have a few years, at least. Much to my surprise, McCanless is ready! (As always, milestones so early for her.) She has lost nine baby teeth and has a mouth full of permanent teeth, so we were told it’s time. She will most likely have to have two sets, no matter when she has them, so at least we’ll start this whole process early. Mel nor I had braces, so this is all new to us. She was a champ when she had her spacers placed, and has only complained once since having them on. Nothing a little dose of Tylenol didn’t cure! She is such a strong girl. I’m so very proud of her.
I can’t believe how much older she looks. I’m going to miss that McCanless gap.
Happy Birthday, “Nonnie!”
In honor of my mother’s 60th birthday, I’ve decided to post a few photos of her and my aunt, “Sissy,” rockin’ out with the Wii…
McCanless, Sissy and Nonnie (Kate’s reading with MC in the chair)
I don’t think they meant to dress alike.
Heartfelt Couture
Go to Heartfelt Couture
How amazing is this ministry? Want to know what else is amazing? Keri Abshier, owner and creator of Heartfelt Couture, contacted me and wants to make a gown and prayer pillow for Mary Clare’s upcoming hospital stay! It brought tears to my eyes to know that my sweet angel will have her very own hospital gown that she will actually want to wear!
Neurology 101
I just realized I never posted an update on our most recent MUSC venture… We packed up and headed to our beloved Charleston once again last week for a visit with Mary Clare’s neurologist Dr. Turner. We adore him. MC adores him. If we have to have a neurologist, he is certainly our man. Very Steve Carell-ish. In fact, he has a photo of Steve Carell on his iphone and a little iphone trick in which Steve Carell seemingly calls him.
Nothing new. MC has seizures. She will most likely have another. Her little brain is just made that way. The lesion on her right frontal lobe may be the culprit but it will never be certain. Her seizures have nothing to do with her heart and vice versa. Not only does she have HLHS, she has HLHS and seizures, which Dr. Turner says he, “never sees.” Such a unique little girl we have!
We have decided to wait on giving her daily oral meds. If/when she has another seizure, Dr. Turner strongly urged us to begin meds. We just feel like she will have so much going on in a couple of weeks, we didn’t want to mix in another medication and potential side effects. So far, so good. No seizures. I even allowed her to go to the beach for the night with my mom. (I nearly had a panic attack at one point as they were traveling down and I lost contact-thanks to my mother’s uncanny ability at keeping her phone dead at most times.)
Mom took the girls to the beach. They danced in the Atalaya Castle in Murrells Inlet and watched princess movies. No seizures for her. Only one panic attack for me. Life is good.
Ebony and Ivory…
McCanless has now taken three group piano lessons at Coker College. Last week, she complained that she wasn’t allowed to “just play.” I explained that she has much to learn before she is able to take off on her own. She seems to enjoy it for now, although she’s not chomping at the bit to practice. (She has always loved music and has an amazing ability to learn lyrics extremely quickly.) We’ll see how it goes. I so hope she enjoys it and continues.
Her piano recital is in April. Wish us luck!
Trudging on…
It’s hard for me not to pretend everything is completely fine. It’s what I do. Put on a smile and everything falls into place. Usually. During the course of events last week, I (for the most part) kept it together. Until I fell apart, that is. On Monday, I decided to spend the day with Mary Clare. I took her to school, explained her health in detail to her teachers and explained her emergency seizure meds. It was a fun day in her little class. When we left at noon, I felt okay with leaving her there in the mornings once again as I went back to work.
It didn’t take long for reality to set in. On Wednesday, to be exact. I woke up bright and early, jumped into the shower, woke-up McCanless for school and just before we were to walk out of the door ready to begin our day, it started. I cried. I sat on my kitchen floor and I cried and could barely breathe. I called in to work to explain that I was going to be late and I explained to sweet McCanless that Mommy was just sad. I hate this for her. I hate that she is learning so many emotions at such a young age. I don’t want to hide it from her, so I’m forced to explain how scared Mommy is, how seeing my babies hurt makes me cry. She was so kind and showed maturity well beyond her precious seven years. I hope she can forgive me for having to leave her again for the sake of her baby sister.
I made it to work only to be greeted by many of my dearest friends, other moms who work at THA or just moms hanging out for coffee in the office. The usual AM crew stopping in to gossip or chat. We were all in tears before I threw in the towel and left for the day. (Well, for the hour-I left around 10.)
I then made a decision. I decided after crying all morning, I was done. I went home, threw on a pair of my favorite jeans and got myself together. I picked up Mary Clare and realized McCanless had her orthodontist appointment at 12! Life was continuing on with or without me. It was a gloriously sunny 70 degree day that I was not about to let go to waste.
I guess everyone has to learn “new normals” in life. No matter how we go about them, we face them. We can kick and scream and fight it every step of the way or we can embrace it. We can put on a smile and everything will fall into place, however that may be. I may not like it, but life is going on with our without me.
I don’t turn my head for a second when Mary Clare is in the bath now. I don’t allow her to sit on the edge of the stage at our favorite coffee shop, Midnight Rooster, anymore. I watch exactly what she eats, I notice her body movements. I call out to her every few minutes as she’s playing alone in the playroom. I’m already thinking ahead about her favorite summer pastime, swimming at the pool.
But this week, I’m not watching Mary Clare’s chest for breaths as often. My heart is not constantly pounding. I’m not reliving her seizure every time my mind wanders. I’m not thinking too far ahead.
We went to the orthodontist appointment, we all had lunch together, we played in the yard. McCanless had her very first piano lesson on Wednesday afternoon and Mary Clare and I completed her first school project together, her Terrific Kid poster. It wasn’t perfect, but it was so very precious. As is life.
Update on Miss Mary Clare
After listening to neurologists for three days at MUSC, I think Mel and I agree that neither one of us will ever be close to understanding neurology, neurologists or the human brain, especially Mary Clare’s. (Not sure if it has anything to do with genetics or not…wink.) She had an MRI and an EEG while we were at MUSC and her team of docs discussed her little brain and heart at length. We don’t have many answers and know little more than when she was admitted on Wednesday. She has all of her neurologists and cardiologists stumped. Apparently, she’s a fascinating little one, but we knew that already!
For the most part (from our understanding, anyway) cardiology can be black and white. Extremely complex, but black and white. “This is what’s wrong. These are your options. This is what can go wrong. This is why.” Neurology is gray. An utterly confusing, vast, gray field. “We may or may not know what’s wrong. Meds may or may not aid. This may or may not happen. We may or may not know why.”
Mel had a tough time with this. I guess daddies just want to fix everything, or know how to, at least. I think he just couldn’t wrap his head around all of the unknowns. When we first learned of Mary Clare’s HLHS, he studied the surgeries. He knew the terminology. He knew exactly what they were doing, what her chances were, the percentages and everything involved. With the new issue of seizures, there is nothing to grasp, nothing to understand.
I still don’t completely understand how her little heart works, so this is just one more layer of my sweet MC that is a complete mystery to me. I do know that she is happy and she is mine for now. She loves life and I love that little life of hers!
A few other things I do know:
-Mary Clare has had three seizures/seizure activity in the past month. We noticed that she had “ticks” during a fever when she had the flu after Christmas. Her second “Grand Mal” seizure two weeks ago was after a fever from an ear infection and her third, another “Grand Mal” seizure happened at school with no symptoms. We thought the first two seizures were simply Febrile seizures. (Febrile seizures are seizures caused from a rapid increase in body temperature, i.e. fever, and are fairly common in children. In fact, I had them as a child and outgrew them as most children do.) We now know that they were not Febrile seizures, as we had hoped.
-The MRI ruled out the biggest threat of clotting. Clotting can be an issue in kids “close to Fontan age.” Which is also why the cardiology team wanted Mary Clare down there STAT, hence the chopper ride. Her seizures have nothing to do with her special heart. Now we know she has a special heart and a special brain.
-They can see from the MRI that she has a brain lesion, which is an area of injury/damage to her little brain. This most likely happened during one of her heart surgeries, possibly from being on heart/lung bypass and/or ventilator. We’ll never know how it got there, just that it’s there, specifically in the right frontal lobe. It seems to be an “old” lesion. Again, this may or may not have anything to do with her seizures.
-The neurologist mentioned the word “Epilepsy” and told us not to freak out with the word. He said it is the most misconstrued diagnosis. He explained how every brain is so unique and there are so, so many types of seizures/epilepsy. So we forgot that word.
-The neurologists introduced us to several types of anti-seizure meds and explained the benefits/risks/side effects/etc. in using each. Apparently, it’s trial and error to find what works best for each person. After much consideration and discussion with cardiology, neurology, cardiology, then neurology and cardiology once again, Mel and I feel that it is in Mary Clare’s best interest to wait on the daily meds. Our cardiology team is completely behind us in this decision and the neurology staff agreed that it would not harm Mary Clare to hold off on the meds. They urged us strongly to start meds if/when she has another seizure. (We do have a prescription for emergencies -in the event of a prolonged seizure.)
-It is almost definite that she will have another seizure, we just have no clue when it will be.
-We will have a neurology appointment before her surgery in March. Surgery date of March 9th has not changed.
Mel and I have complete faith in MUSC, her medical team, and most importantly God. We both feel that once we get through her Fontan in March, and we’ve done all we can to get her little heart in a proper working order, we’ll revisit the anti-seizure medications and tackle that little brain of hers next!
This is a tiny corner of mural on the 7th floor of MUSC Children’s Hospital-Emerson and Mary Clare’s own little part of MUSC. Before we leave after Mary Clare’s Fontan, we’ll gladly leave another set of hand prints!
Wireless cardiac telemotry, aka Mary Clare’s Jet Pack! Now if they can only figure out how to stick the leads without sticky pads! Ouch!
Rainbow hair from her EEG!
Way to Go, McCanless!
Guess what 1st grader received THA Terrific Kid award today? Miss Lillie McCanless Pennington, my very own terrific kid!! I’m such a proud mommy!
MUSC
We’re back at MUSC after Mary Clare had yet another seizure yesterday. It was a scary day which began with a couple of ambulance rides, a helicopter ride and ended last night at the MUSC Children’s Atrium bandaging dolls and playing her little half heart out as if it was just a regular day in Charleston!
Today, we have lots of tests and appointments to get to the bottom of her seizures. We are currently waiting to see our little sweetheart as she is awakened from her MRI. She’s such a big girl and has already stolen the hearts of everyone around her with her spunky little personality and witty charm. Such a ham, even under these circumstances!
Daddy did the packing, obviously!
Then, it seemed like an eternity away.
The Fontan was a distant milestone that would be our last hurdle. She would be around age three. Such a big girl by then, it seemed at the time. I remember looking at my tiny newborn Mary Clare and hoping and praying and begging God to let her survive. If she could make it through this, now, she could make it through anything. And the Fontan would be a breeze.
Years, months, weeks away. As it grows near, I find myself forced to face reality. It’s here.
I hate Hypoplastic Left Heart Syndrome. With every ounce of my being. I hate that my daughter is defined by her defect. I would be lying if I said that it hasn’t changed each of us. It is who she is. Like the scar on her precious chest that reminds me everyday that her body is not as perfect as I’d like, it will be with her forever. Funny thing about that is, I wouldn’t change her for the world.
This past weekend, Mary Clare had a seizure. It was a febrile seizure, brought on by fever. We were at the beach for the long holiday weekend when it happened. After a scary morning, ambulance ride and lots of questions, prayers, and tears, all is well. They are fairly common. Now, I know. But to say it was one of the most horrifying experiences I’ve ever had would be an understatement. I’ve seen her tiny 6 pound body ripped apart, plugged into dozens of machines, wires, and tubes. I’ve watched her lay silently with her eyes closed for days in a hospital bed. Nothing, however, could have prepared me for what I felt the morning of her seizure. The feeling of complete helplessness and fear overwhelms me to even remember. The look of nothing in her eyes, the horrendous sound escaping from her and the feeling of her uncontrollable body haunts me still. I wasn’t surrounded by her doctors and nurses. I had no one to there to take over to fix everything.
I will never forget how nothing else mattered.
I heard my mom tell me she was having a seizure. My first thought was to get her safe. I placed her on the couch to watch her. Then my own heart dropped as I thought of her tiny heart. I didn’t know how or if seizures affected her half heart.
When my mother took McCanless back to the house, I laid in the hospital bed alone with a groggy Mary Clare. Her IV tubes were draped across my chest and I cried. I sobbed. For the first time in months every fear and emotion hit me all at once. Reality slapped me in the face. Square on.
This week was rough for me. I couldn’t shake that uneasy feeling. I kept seeing Mary Clare and reliving the thoughts I had during her seizure. It’s amazing how your brain never stops. Today, however, I’ve kicked into planning mode for Mary Clare’s Fontan. Details of schedules for McCanless, bills, pets, household tasks are being ironed out. I’ve cried several nights this week, but no more. I’ve got to face it. If she has to do it, the very least I can do is help prepare.
God gave her such spunk and spirit for life. Her HLHS may be apart of who she is, but Mary Clare is who we love and adore. Scars and all. I know she may not realize what is about to happen to her and I can only hope and pray that she’ll forgive us and understand one day. She knows that once her heart is “fixed” we’ll go visit the princesses at Disney. I’ve never been one to wish away the time, but I dream of the summer. I ache for the summer. For her. Snow and Fontan behind us. Princesses and life ahead of us.
Mary Clare’s First Visit to the Dentist
Mary Clare has been to the dentist with me several times, but has never worked up the nerve to actually sit in the chair alone. Until now…
Clean little pearlies! No cavities!
Three Days of Snow!
We’ve NEVER had three consecutive snow days. (We’ve never had three snow days in one year for that matter!) The girls’ team has not left our house since Sunday and it’s been wonderful! Yesterday, although the snow wasn’t falling, it was still very cold and gray. Mary Clare and I stayed inside cooking and watching Disney movies all day. She’s not much of a winter baby! In fact, yesterday, she put on her bathing suit and asked to go to the pool because she didn’t like the snow. (I guess she thought it would be warm by the pool.) We did, however, manage to go out a couple of times to feed the geese and snap a few photos.
McCanless, on the other hand, stayed outside all day long with the neighborhood “big girls.” They only came inside when they were hungry or when I forced them to come in for a break!
This morning, we awoke to the sun peeking through the trees…
…and the snow beginning to melt away!
The big girls were a little bummed, but didn’t let that keep them from another fun day in the melting snow!
We have school tomorrow with a two hour delay, so hopefully our early morning won’t hurt too badly. We are most definitely back on our Christmas Break schedule of late nights, late naps and even later mornings. We’ve had a fabulous snow break!
Snow Again!
On December 26th we actually had enough snow on the ground to make snowballs. It melted quickly and the shining sun brought back our typical sunny, 50ish degree SC December weather. This month, we have had yet another snow day! This time we have enough snow on the ground to make a snowman! Not that the girls’ team can endure the snow long enough to actually make a snowman, snowgirl or even snowbaby for that matter. But that’s beside the point. We could.
School was canceled for today and has even been canceled for tomorrow. The Governor has declared SC in a state of emergency due to severe weather! Mel is loving the action and is keeping quite busy! You should join him on Facebook. It’s quite exciting. (wink, wink)
When Mary Clare peered out of the window this morning, she gasped and said, “You made it snow, Daddy!” After a very late and very big breakfast, we ventured out to brave the cold!
…and she’s off!
Wow! Nine inches, the news reported!
Our cozy little creek house.
My snow angel 
Emmie ran and ran and ran!
and so did McCanless!
After a healthy lunch of warm, mushy chocolate chip cookies and hot chocolate, we settled in and watched the Wizard of Oz. It’s almost 5pm and the girls are napping still. Looks like we’ll have another late night and lazy day tomorrow.
Happy Birthday to McCanless!
My sweet McCanless turned seven on Wednesday, January 5. She shared cupcakes with her classmates…
and that evening the four of us celebrated at one of her favorites, Miyabi’s. (Japanese) She received many phone calls from aunts and grandparents wishing her a happy 7th year!
On Thursday night, we also had a small family dinner at another favorite, Los Tres. Where else? (By small, I mean the usual: Aunts, uncles, grandparents, the whole crazy crowd.)
Then on Saturday…
SURPRISE!
Where is McCanless? As soon as she walked in and everyone jumped out yelling, “Surprise,” she ran and hid.
Not for long, however!
This is Bobby D, the infamous piano player at Louchi’s. We found out that he and McCanless share a January 5th birthday! He was gracious enough to play special birthday songs just for her!
The party continued at home with Just Dance on the Wii!
Later that night as McCanless snuggled in the bed with me, she told me that her surprise party was awesome, the best party ever.
Happy 7th Birthday, Lillie McCanless!
White Christmas
We drove out to Nonnie’s house the day after Christmas to enjoy the snow with my family, still in town for the Christmas weekend.
Ready for the fight…
Mom pulled our old school snow gear out of the attic. Remember, it only snows once in a blue moon around here. No fancy bibs and jackets for us.
Apparently, McCanless needs waterproof gear, too.
Kacy and William practicing their first dance.
After about 10 minutes, Mary Clare and Emmie had had enough. In fact, we all had had enough. We went inside to hang our clothes by the fire to dry and watch the snow fall through the windows.
Christmas Day 2010
Kacy got a Wii for Christmas too, and guess what she packed up and brought to Nonnie’s house?
Merry Christmas!
As I sit and type this morning, Mel and McCanless are snuggled in my bed and Mary Clare is probably still sleeping with my mother. (She chose to spend the night with her Nonnie last night.) After a couple of days filled with family, laughing and Wii, it’s nice to have some peace and quiet. It is actually snowing outside and looks so beautiful. There are still gifts on the floor and Rapunzel hair all over the house, but today is filled with calmness. A stark difference from yesterday’s fun, crazy chaos.
What a beautiful life we have.
And as quickly as my moment of peace and quiet began, I hear McCanless’ feet hit the floor. She just came running into the den to announce to me that there is snow outside! She then asked me why her arm and belly were “hurting a little” here and there. I explained how that kind of hurt is a good thing….soreness, courtesy of the new Wii.) Merry Christmas!
Here comes Santa Claus…
Efly has been watching!
The annual Lights Before Christmas Tour of Hartsville in the limo…
The girls and I started our treats for Santa yesterday but didn’t quite finish. We’ll get around to that today! We’re going with something a little less traditional.
A little shimmy with your bake.
So, Clare and I got carried away with the photos…
until she swiped my camera lens with a big dollop of chocolate cake batter. McCanless got us back on track and on task. We’ll post photos of our snow balls for Santa when we finish them today!
We’re almost ready!!
Sprinkles Galore!
A little confession that worked like a charm… You can probably see the clear “glaze” under the roof of this house…
Sissy sent us an awesome preassembled gingerbread house. (On a side note: I, like my girls, love to create and get crafty, so I wanted my turn at the house, too.) So, I bought a set of gingerbread village houses and hot glued them together before we began. (i.e. clear “glaze”) The girls each had a few mini houses to work on as I was able to start the big gingerbread house! When we were finished, we had a huge Santa’s house and five little elf houses! Too bad we can only eat the big house! (wink) Thanks, Sissy! What an awesome gift!
Whew!
My mother called yesterday to let me in on a bit of information she found this week. After hearing her news, I’m not too terribly concerned with MC’s slow weight gain. Apparently, she may take after me. Mom found a “Stats Record” from my first grade year of school. In the first grade and age six, at Thomas Hart Academy, I only weighed 45 lbs. Hearing the news, left me feeling relieved because I know for sure one day, she will catch up to the rest of us! (I certainly did. wink wink)
You better watch out…
You better not cry
You better not pout
I’m telling you why
Santa Claus is coming to town.
1st Grade Christmas Party
Today, I helped McCanless’ class with an ornament swap. I found a cute story about “Lefty, the Elf” and took it to her class to read aloud. I had the class sit in a circle. Each student brought a wrapped ornament and as I read the story (which was written exactly for a swap such as this), the students passed their ornament to the left when I read the word, “left” and right when I read the word, “right.” It was hilarious. It took them a few minutes to figure out the whole process, but once they got it, I read faster and faster and they passed faster and faster. Unfortunately, I didn’t snap any photos of the swap. I was too involved and had to pull out my teacher hat for this one. So fun!
After the swap, I gave them “naked” cupcakes, as McCanless said, tubs of icing, sprinkles and candy galore. A few of the results…
McCanless’ cupcake (the tallest)
By the way, that teeny, tiny, itty, bitty tooth to the left of McCanless’ two front teeth (the one hanging on for dear life) fell out tonight, finally! The permanent tooth is already coming in right behind it! This will be #9 permanent for her!
Dear Santa,
Obviously, we mailed the letters that the girls wrote (with no help from mom), so the following letter is Mommy’s version…
We hope this letter finds you well. We have tried to be very good girls this year. Mommy says it can be hard for us sometimes, but we’ll get there. I, McCanless, have 8 permanent teeth and two additional loose ones! I’m in the first grade and doing so well. I love school (usually) but I still have a hard time waking up in the mornings. I love art and I love to create. I’m still loving dance and have taken after school art lessons this year. I’m asking for a rock tumbler, art supplies and a new bike. I’m a very good big sister. I’m patient and loving with Mary Clare and she thinks I’m very cool. She is adjusting to 3K and is quite the class clown. She looks forward to her dance class, Broadway Babies, each week and loves to twirl. She loves music and dolls and dressing up. She hasn’t asked for anything specific, other than a “music ball- like in Minnie’s” (snow globe) and new green pappies. So surprises will be great for her.
We have been so healthy and happy in 2010 and are looking forward to another great year! McCanless’ seventh birthday is in January; Mary Clare will have her final reconstructive heart surgery in March and will turn four in June! A big year is in store for us!
Love,
The Pennington Girls
Haul out the Holly
Mary Clare was in charge of the beads this year. (Since she always rearranges them anyway.)
Hartsville Christmas Tree Lighting 2010
I had grandiose plans of a magical tree lighting this year where I would snap photos of my babies, possibly with daddy, in front of Hartsville’s great Christmas tree. Not only were we late arriving, almost missing Daddy’s opening words, we failed to get one single photo of both girls facing the same direction, let alone smiling.
Winter Wonderland 2010
THA had a beautiful winter musical this year with ice skaters, snow bears, dancing snowflakes, ballerinas, snowball fights and nine little reindeer. McCanless was a Christmas caroler and Mary Clare was Vixen in the reindeer lineup.
Can you spot short little Vixen?
It’s beginning to look a lot like Christmas…
You know the seasons have changed or a holiday is near when McCanless gets busy with the pantry door…
A little reminder for Daddy…
Last year, we sent out New Year’s cards, and it looks like that may be an annual occurrence. (This is a little nudge to my sweet hubby that we must have a family picture made for our cards. Soon. Very soon, Mel.) Unless, of course, you want to send out your card from last year…
(This was the card Mel created after I “nudged” him last year.)
It’s the most wonderful time of the year…
Our schedules are always busy and if you know me, you know I love to be at home. (I don’t really make the best Mayor’s wife because of this, by the way.) If I can get out of an event or party, I sometimes do. I love people and I love to socialize, but over the past couple of years, I find such comfort in being in my home with my babies. I hate to leave them. (Secretly, however, I love the busyness and excitement of this time of year.) That being said, we do have lots of events that we all attend together, which is great! Today is a prime example. After the Hartsville Christmas Tree lighting last night, today we have…
10:30 Hartsville Christmas Parade (Daddy is in charge, as he has been for several years. McCanless has chosen to ride on the THA float. Mary Clare and I will walk with Daddy as the Mayor’s family.)
10:00-1:00 Downtown Market Place (We’ll stop by at some point.)
12:30 Mel’s family reunion at his grandmother’s house
1:00 McCanless to Coker College for Cheer camp
2:00 Mel is performing a wedding ceremony (Several people have been crazy enough to ask him to do this over the past couple of years.)
4:00-6:00 Mel has a visitation at the Funeral Home
4:00 SEC Championship Game USC vs Auburn Let’s not even talk about that. I still love my Gamecocks!
5:30 McCanless will perform at half-time of the Coker College Girls Basketball game.
7:00 Mel and I have a wedding to attend here in Hartsville. (Girls will stay with Mimi and Bapa, until I pick them up bright and early for church.)
After meeting about the children’s Christmas Eve service at church tomorrow, I think we’ll crash!
I was just reminded, once again, how very precious life is. A friend of mine, a fellow blogger, and adult CHDer passed away today. I have linked to his blog, Adventures of a Funky Heart, on numerous occasions and over the past couple of years have really gotten to know Steve through emails. He became a fan of Mary Clare’s and was a great source of comfort, support and knowledge for me. Just four days ago, he passionately blogged a challenge to eradicate CHD by November 29, 2024, the 80th anniversary of the Blalock-Taussig Shunt. He was an amazing writer and an amazing person.
Steve was born with Tricuspid Artresia, which is similar to HLHS. He had the BT shunt when he was very young, and an early version of the Fontan, which left him with a single ventricle anatomy like Mary Clare. Although he had a pacemaker and survived numerous health difficulties over his life he was considered an “oldie” complex CHD survivor at age 44. His wit, his passion for CHD awareness and research and his courage will be terribly missed, especially by heart moms and dads who looked to him daily for inspiration and hope.
Life is precious.
Happy Thanksgiving 2010
McCanless is working on place cards, as she does every year, and I’m finishing up a few dishes in the kitchen. Mary Clare has changed princess clothes about 100 times (depending on who she sees in the Macy’s Parade) and Mel is already dozing on the couch. Soon after the Macy’s parade, we’ll head out to the Redfearn Tree Farm cabin to celebrate Thanksgiving! It is such a wonderful day. We all have so much to be thankful for!
Especially this little turkey!
2010 THA Grandparent’s Day
Can you find our little turkey?
Guess I should say ham!
Bapa, McCanless and Nonnie and Mary Clare
Bapa gave a wonderful welcome to all of the grands and told stories of his own grandmother, Lolla.
If you notice in the top two photos, there is a large turkey on the stage curtain with “Feathers of Thanksgiving.” These were feathers created by the 3K-5K students after being asked what they were thankful for. Displayed on each creative little feather is the students’ response. Mary Clare’s just happens to be front and center, the very first feather on top of the turkey’s head.
We’ll have to work on that.
Dizzy in the Streets
Last Thursday evening, McCanless and her dance team walked throughout downtown entertaining shoppers. (It was the first Downtown After Hours Christmas Shopping Event.) They circled the block and stopped in front of a few shops to dance. They had so much fun walking downtown hand-in-hand and showing off their “All I want for Christmas…” dance!
Meanwhile, Mary Clare played reporter and captured lots of photos. (Such a big help.) I took this of her while McCanless and her dance crew were stretching at the studio before we hit the streets.
“All I want for Christmas…
is my two front teeth!”
The Juice Girls and Alston
(Alston came into town to help Meg, the owner of the cutest children’s shop, for the evening. Kate works at Juice some, too….small town!)
Yay, McCanless! We love watching you dance!
Afterwards, we did a little window shopping ourselves!
Black Creek Arts Center Ornament Workshop
We have already kicked-off the Christmas Season! Last week, we went to the Black Creek Arts Center for an ornament making workshop.
Mary Clare had fun creating her ornament for about 6 minutes, then decided it was much more fun to play in the sequins.
McCanless, on the other hand, meticulously placed tiny sequins on her ornament until it was just the way she wanted it. The finished ornament had little rows of many different shades of green. Mary Clare’s was a half covered ball of randomly placed sequins of every shape and color.
After the workshop, the girls had fun outside pretending to be statues.
Seven years, two babies and a whole lot of everything in between…
So here I am, 1,000 posts down and lots to show for it. Back in January of 2004, when Mel began babypennington.com, I would have never imagined I would still have it going. Yet, seven years later, here it is. I once had grandiose plans for my 1000th post. Today, however, I barely realized it was my 1000th post. As life would have it, today I’d rather show off photos of my dancer than anything else. So hurray for my 1000th post: adorable photos of my oldest daughter in all of her glory. Exactly how it all began! She has certainly changed since 1,000 posts ago!
Eliza and McCanless at JUMP! Dance Convention in Greenville, SC this past weekend.
“Wash That Man” before…
and after…
I just love my silly dancer!
Quick update: Day 24 for Emerson
Halloween 2010
Emerson is still at MUSC with her mom and dad waiting. They have been there for 24 days. She had a drain tube pulled this week, she has air pockets in her lungs and her numbers are such that they will keep her there a bit longer. Please pray that drainage will stop and they can pack up and head home! Head over to her carepage: EmersonBanksMay to wish her well and check on her! I know, as a parent, it makes such a difference to know other people are praying and care for you. Sometimes, after weeks in the hospital, you know the world must continue on, but it feels as though you are completely forgotten. The days are endless. It truly makes a difference to keep connected to others.
We love you, Emerson!
Thanksgiving
Today, I found a list of items on a fellow heart mom’s blog. She called MUSC and asked for specific items that children need while in PCICU and 7-C, the pediatric cardiology units. I told her I’d love to re-post the list and together we could gather many of the much needed items. I think it is a great idea as we approach the Thanksgiving season. We both have healthy babies who have defied the odds. We have so much to be thankful for and so many reasons to give back.
You may think that, surely, parents supply most of the items for their babies, and in some ways you’re right. As we entered Emerson’s hospital room on our most recent visit to MUSC, it looked much like our own Mary Clare’s past hospital rooms full of balloons, flowers, dolls, blankets, cards, toys, books, love. Her mom and dad were there with her around the clock every day, and are still there with her, today. However, in many cases, the babies found in these units are without parents. For whatever reason (the financial stress, emotional stress on the parents, etc.), these precious heart babies face the most difficult days of their lives alone. It surprised my mom to see empty rooms on 7C. She was shocked to find doll sized babies lying alone.
Below is the list of items. I will be making a trip to MUSC early in December and plan to take items that I gather. If you feel inclined to donate, just let me know! I’d be happy to fill up my car and take a load!
- swings (typically small, travel-sized)
- vibrating bouncy seats
- sippy cups for toddlers
- mobiles (cannot have any cloth on them because that would be an infection issue; all parts must be plastic)
- blankets for toddlers
- books for infants and toddlers
The South Carolina Sate Fair 2010
Yes, these are the big swings. Mommy was about to have a nervous breakdown, but my little daredevil has no fear!
Kate and Charles met us there, so they were able to help with some of the more adventurous rides that Mommy chooses not to ride!
View of Williams Brice Stadium from the Ferris Wheel! Go Gamecocks!
The girls’ favorite animal that day.
Mary Clare seemed to be loving the dragon “baby roller coaster” at first…
but by the time it came ’round the bend, baby sister was not happy!
Don’t worry Mom, in between the junk food, we ate our veggies! (Fried pickles, fried broccoli, fried mushrooms, fried zucchini, fried cauliflower…)
Not quite tall enough for the big girl bumper cars.
Mary Clare loved her blue “sucker”, until she realized it had an apple inside of it.
I found a manila envelope in the mail this afternoon with an MUSC sticker in the return address. I knew what it was, but I just couldn’t bring myself to open it. Maybe if I ignored it, it would go away.
Of course it didn’t, so I opened it tonight after dinner.
Dear Mr. and Mrs. Pennington:
This letter is to inform you that arrangements have been made for your child’s heart surgery at the Medical University of South Carolina by Dr. Scott Bradley…
The surgery has been scheduled for Mary Clare on 03/09/11…
I received the phone call last week so it’s no surprise. Last week, the call was a shock. Tonight, not so much as a quiet reminder. I’ve thought about it every day since receiving the phone call.
I wonder if I’ll think of it every day until surgery?
Mel and I both were so thankful to know of her special heart before she was born, but this time is different. I know Mary Clare. I didn’t know her then. I didn’t know that she would have little, blonde braids, a huge, sweet-tooth and say, “Torrible” instead of terrible or horrible. I didn’t know that her favorite food, second only to chocolate, would be “flat cheese” folded twice into a perfect square stack. I had no idea that she would love her green paci, even at 3 1/2, and drink juice all throughout the night and emulate her big sister. Or that she could walk into a room and consume everyone’s attention by doing nothing, and that her favorite outfit would be a pink dance leotard and “Fuzzy Uggs.” I’m sure I didn’t realize that she would completely frustrate me one moment and melt me the next with her little blue hands hugging me and giving me her “kitty cat head rub” against my cheek.
I hadn’t explained her half-heart a thousands times, or tried to explain how it actually works. I hadn’t defended her physical weaknesses. I hadn’t bragged about her her beautiful, blue lips and scars. I hadn’t held her countless nights as she slept, hoping and praying that she lived until the next day. I had yet to experience what it truly meant to be her mother.
I’m not sure what to expect this time. I know it will be different. Until then, I’ll try not to count down the days. I’ll keep on fussing about her little spunky attitude and sassy mouth (and secretly loving it). I’ll keep hugging and kissing my blueberry everyday. We’ll have lots of fun and busy weeks until March and it may cross my mind often, this third surgery of hers.
I may not be ready now or even in March, for that matter, but one thing that I know is certain, I will thank God everyday for every moment we spend with Mary Clare.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
–Reinhold Niebuhr/William Spence
BOO
A Happy Little Pirate!
How’s this for a neighborhood Candy Crew?
This “Pink Princess on a Flying Pink Pony” was in candy heaven!
Happy Halloween!
McCanless’ 1st Grade Field Trip to McLeod Farms
Only a week after Mary Clare’s trip to McLeod Farms, McCanless’ class also visited the pumpkin patch and corn maze at McLeod. It was certainly much cooler (and McCanless and I are definitely fair weather girls), so we bundled up, picked more pumpkins for our front porch and made the best of the chilly and rainy weather.
McCanless was not a fan of the corn maze. She continually questioned the logic of getting lost in a field of dead corn and cried because she was wet and cold.
Boo at the Zoo
Nonnie treated us all to a night at Riverbanks’ Boo at the Zoo! We gathered a few costumes, treat bags and the Fort crew and headed to Columbia.
This was the first round of costumes, so McCanless decided to go with rocker/punk wear and Mary Clare was a princess for the evening.
Is it just me, or does Mary Clare look a lot like my future brother-in-law in this photo?
What a beautiful night with great friends and family! We had so much fun, Lori and I took Edward and Mary Clare back the next day (to actually see the animals).
Mary Clare’s absolute favorite exhibit was the penguin pool. She stood mesmerized.
Pre-Halloween
Pumpkin carving, Boo at the Zoo, carnival going, spooky Kalmia Garden trails and Halloween parties are all apart of our Pre-Halloween Fun! (Which is why we gather several costumes each year.) Both of my girls never seem to be able to make a final decision on costumes each year, and frankly, they tire of wearing the same costumes to our events. So, to make it easier on all of us, we gather lots of accessories and have lots of choices in costumes! Sometimes all it takes is a trip to our very own dress-up trunk! This year, Mary Clare decided on her pink pony costume about 20 minutes before we walked out of the door to go trick-or-treating. She had been Snow White all day but made a last minute costume change. Typical. McCanless surprised me and wore her Pirate costume most of this Halloween season.
We pimped out our Jack-O-Lantern this year, thanks to Kacy and William. They sent the girls a princess/ bling carving kit. Mary Clare had nothing to do with the pumpkin once she had a good look at the insides. She screamed once her hand touched the “slime.”
This was the night of the THA Halloween carnival. Mary Clare decided to be Katy Perry, aka Cupcake Fairy.
40th Day of School Pep Rally
Do you know how great it is to have a grandfather as a headmaster?
…especially if you are a Pennington girl.
Go Hornets! We love THA!
McLeod Farms 3K Field Trip 2010-Mary Clare’s Class
It was a beautiful sunny day at McLeod Farms with butterflies everywhere!
I think the moms were more into the story than the kids!
Ms. Kate with her 3K class! 3K all the way!
3K with their pumpkin. They took a big green pumpkin back to THA to see how many days it would take to turn orange! (It took 11.)
Life as usual…
It seems I often begin posts with the typical, “It’s that busy time of year again…” Then I realize, it’s always that time of year. We always keep busy, no matter what the season!
Prestwood Marshmallow roasts…
Fun outdoor birthday parties with family…
Lots of Halloween costume trial runs… (even as pajamas)
A couple of trips to the SC State Fair…
Caramel apple making at Nonnie’s house…
Yum
and carnivals with a few of our favorite THA teachers Doodle Bops.
I Love You
Only a week after her Fontan, Mary Clare’s best heart friend sends her love! This is Emerson sending an “I Love You” to Mary Clare through a text message. Her mom, Erica, and I have been friends since these two were in the womb when we first learned of their special hearts. Walking down this difficult path has been made so much more bearable knowing we have each other. Sweet Emerson had her surgery at MUSC last week, spent the week in Pediatric Cardiology Intensive Care Unit (PCICU) and is now in the step-down cardiology pediatric recovery unit, 7-C. She is on a no-fat diet and is playing the waiting game. For the Fontan surgery, drainage can be a huge issue, and, typically, it’s what keeps these heart kiddos in the hospital for such a long time. She has done well so far, but I know it’s such an emotional roller coaster. Please keep sweet Emerson and her family in your prayers.
Mother to mother, we have shared the journey, cardiologists, hospitals and stories of our two little sassy girls. We’ve been at every birthday party and have kept in touch for four years now. Most importantly, we share a strong faith in God. The same God that brought us together and the same God who blessed us with Emerson and Mary Clare.
Check on Emerson at CarePages.com: EmersonBanksMay
Happy to report…
..that Mary Clare has had a great few days at school. No notes home from specialty area teachers and all smiley faces and stickers from Aunt Ms. Kate! In fact, Ms. Kate texted this photo of my Rock Star to let me know how great she was doing! G is for Great, baby girl! I’m so proud. (The embellishments from the dress up trunk are an everyday occurance, according to Ms. Kate.) I do love my youngest daughter’s flair!
Speaking of flair…Just had to add this photo I snapped after our surprise Fire Drill last week. Check out the pink sequined little duck in the front of the 3K line. And although I have little say-so when it comes to what the girls wear every morning for school, I don’t recall her wearing this to school. (Dress-up trunk again, I assume.)
I was able to snap this photo as I hid behind their cubby wall.
Different day, same wig.
Fall Sick Day
A stomach bug ran through our house a couple of weeks ago and had the girls’ team out for a couple of days. We were in it together, however.
After a day of soup and pedicures in front of the fire (McCanless’ feet and the fire for ambiance only), a bit of Halloween decorating, and painting, we were back on track!
TV comes to town!
Hartsville was featured on a local news station and the Mayor had to make an appearance! McCanless was thrilled to be in the very front of the crowd, sharing the spotlight with Eliza.
Mary Clare wasn’t impressed with the cameras or the crowd. She and Baby Edward, her pal and Eliza’s baby brother, were content just playing and singing on the “stage” in the park out of the camera’s eyesight.
A Sweet Clinic Visit!
Today, we headed back down to MUSC for a cardiology clinic visit for Mary Clare. It was a relatively short visit, especially considering we were about 45 minutes late! (Mel has a habit of being preoccupied with his phone calls as he drives and often takes slight detours. Of course, I didn’t notice until we were about 20 minutes off course, either.) We were seen immediately after our late arrival. (I guess being the sole patients left to see and at lunchtime helped.) We were able to visit with lots of our MUSC friends and really catch up, something we usually don’t have much time for when they have lots of other patients to see. It was nice to have the time to really talk and catch up.
This was taken with my iPhone just before she assaulted the Lab Tech. (wink) Mary Clare is always so great with ECG’s, echos and her general clinic visits, but when she saw the phlebotomist, she knew exactly what was coming. She began to cry and even told the tech to, “Go Away” as she hit pushed her. A few determined shouts later, she stopped crying even before the needle was out. What a champ.
After the usual check-up, and discussions with Dr. Forbus, MC’s cardiologist, we determined our best bet is to wait until Miss Priss gains weight. Her numbers from her recent cath are excellent, her O2 sats were 85 today, and after blood work, it was determined her heart squeeze couldn’t be better! Physically, her body is as good as it gets. However, she only weighs 13.3 KG/28 lbs. Ideally, Dr. Bradley, her cardiothoracic surgeon, would like her to be 15 KGs. Dr. Forbus told us that he really wants her to gain the extra weight and Dr. Bradley generally doesn’t prefer to do the Fontan during prime flu/sick season, unless absolutely necessary. So, we are probably are looking at surgery in the Spring. Her blood work also ruled out a few other concerns we’ve had, and that was a relief. (Dr. Forbus wanted to check for Juvenile Diabetes and deficiencies in her blood.) All is great! To celebrate, we headed to one of our favorite stops in Charleston, Market Street Sweets! (Ironically)
It was a balmy 95 degrees and beautifully sunny downtown Charleston; but my girls are natural Fall lovers and are so ready for “Boot Season.” (They are their own fasionistas in any season, however.) Either way, they certainly love their boots! What a great day!
Didn’t I say I had to take a moment every now and then? Prime example.
Here is a note I received from Mary Clare’s music teacher last week…
“Mary Clare sometimes has temper tantrums in music class. She gets upset that she can’t be first all the time. Yesterday, she wanted to be a pig in one of our activities; however, she was not chosen. I told her that next time she would be chosen. She put her hand on her hips, shook her head and said, ‘No, I won’t.’ I told her to have a seat. She said, ‘No, I’m not.’ This is when I sent her back to her classroom.”
Hmmm. Well, after thinking and thinking about how to approach this situation, I thought it would be best to pull out my teacher hat. With my mom hat on, I wanted to march into Ms. Music’s classroom and defend my sweet, innocent baby girl. I quickly came to my senses once I realized I didn’t want to be that mom. The one I’ve dealt with so many times before as a teacher. I decided to change my tune. I certainly had to “take a moment.”
Later, I had a little chat with her about having respect for her teachers. In all honesty, however, I’m so glad she has spunk. As anyone else, she is not perfect, will never be and probably has a long road ahead of her, with her little spunk and all. At age three , she has so much to learn and so many life experiences ahead of her. Her little note home isn’t terribly surprising. I certainly see so much of her little “spunk” at home. Deep down, I know she has just enough of that little spark in her to take her far. For that I am so grateful.
This is probably the first of many “notes home” for my little spunky spirit. I’m choosing to see it as a little life lesson for her and another small reminder of all that is wonderful in my life. She is here with me. She is thriving in school. She is able and does a fine job of getting into mischief at school. She is living her life. For that I will thank God.
Just a moment
I often tell myself to “take a moment.” I stop in my tracks and think about what I’m saying or doing and just reflect. Is this truly going to matter tomorrow? I’ve never been one to sweat the small stuff. I try not to overreact. (In fact, I usually under react, which is trait I inherited from my mother.) You all know I’ve followed many heart babies and families and have used the heart community as a great source of support and strength. Too often I read of babies who just couldn’t keep up the fight. This week, I’ve been saddend by two of these babies, Ewan and Joshua.
CHD is ugly and horrible and I just don’t understand why it can’t be figured out. Quite frankly, it makes me furious sometimes and when that happens, I stop and take a moment. I have Mary Clare with me here and now. Why should I be so concerned with something that I really have no control over? I do, however, have control over how I face life. The short precious lives of these two amazing babies will hopefully make everyone, myself included, stop and take a moment to be thankful for the here and now.
Life is so precious.
Pleasantville
We’ve been busy with fall and last weekend was a perfect example. I’ve lost my camera memory card, which is why I’ve failed to post many updates recently. My phone, however, has saved the day (and a few memories) until I can get a new card. Last weekend brought a packed schedule and chillier weather, so we were happy to get out and enjoy it all. We began our weekend with dinner with pals and a late night Sonic playground trip, headed to the Marketplace on Saturday morning, followed by lunch at the Rooster and shopping downtown. Saturday night we helped Daddy welcome all guests and Coker College alumni to the Jazz Carolina street festival and Sunday closed our weekend with church and a birthday party at none other than Chuck E. Cheese! Whew! Our weekends are just as busy as our weekdays, but we love it all.
The “First Saturday” Marketplace is always so much fun!
Edward, Mary Clare, and Reese
The Marketplace also celebrated it’s second birthday, so Mel said a few words and we all (the city) enjoyed birthday cake! Lots and lots of birthday cake.
The Three Amigos getting into something…
At some point, Mary Clare found a headband and lost her boots.
Later that night, we headed back downtown for Jazz Carolina. Streets were blocked off and tables set up for everyone to enjoy downtown “after hours” and live jazz music.
And we certainly did just that. Lots of friends, lots of fun.
…a little too much fun sometimes!
.
Surfers, fishermen and us!
Just the way I love the beach! Mel is off this weekend so the girls team (plus daddy) headed east! Last night we caught a movie and dinner with a few of our favorite pals for a crazy fun birthday celebration. There were 9 girls, 2 boys, two dads, four moms and two aunts celebrating a fabulous new nine-year old! Then we watched/read iBooks all the way to the beach. We slept in this morning, bought a dozen donuts and are now soaking up sun on a lonely beach! So far, so good!
I know one day not too far away, McCanless will happen upon this video and absolutely kill me, but I have to post it! It’s too funny not to post it. She and her friends were playing with Daddy’s Iphone at the birthday dinner last night and this is what Mel discovered today. (The video opens with a friend of hers…)
A promise is a promise!
After a full day of school, homework, a bit of swinging in the yard, assisting our painter with his assessment and quote (by pointing out every single hole, chipped plaster, etc. on our walls-thanks girls), dinner and playing with the iPad, the girls hit the bed and I got busy with my nighttime chores. Mel is busy with Mel work (Fire Dept. tonight, I think) and I’ve finally decided on brand new colors for my walls! Good thing- painter starts tomorrow! But a promise is a promise! An update…
McCanless has finally realized that first grade is not an option and she MUST go. She has made perfect on every single spelling and math assessment thus far. (We don’t call them “tests” this year.) Last night, as I checked behind her homework (she does it completely on her own, I just check to be sure she does, in fact, do it) I noticed that she managed to use all 10 of her spelling words in ONE sentence. And it actually worked! The homework said she could use more than one in each sentence, so she certainly did just that. Today, her teacher told her she loved her creativity. I think it was more productivity-to be able to be done with it! She is in the thick of dance and loving every minute of it. She cheers on her hornets about once a week and looks darling in her cheerleader uniform. (I can’t help but be terribly proud of her.)
Mary Clare is amazing me with all that she is learning! Kate is certainly a fantastic and wonderfully creative teacher. Just this week, Mary Clare was pointing out letters in her ABC’s and meatballs dinner. (Told you I was busy.) She loves THA and is loving being the tiniest hornet! After a rough couple of weeks, we decided that half days were in her best interest. I certainly don’t mind. I’m able to take my snuggle bunny home every day at noon for a nice long nap and alone time before the afternoon rush with McCanless. We have a cardiology appointment on October 5th at MUSC and will definitely make a few decisions regarding her next step, the Fontan surgery. I’m anxious, but ready, as we are beginning to see the effects of added stress on her heart due to her body’s growth. She tires very easily, is often out of breath and constantly wants to be held. She has also started drinking so much water throughout the day and night. I’m not sure if this is due to the still 90+ degree weather or what, but it’s a new change with her. I’m curious and ready to see how her little body is really doing. We’ll do blood work, an ECG, and echo this go ’round. Otherwise, she is as happy as a cute little clam!
Despite the hot and humid weather, we are so excited about fall and Halloween! In true McCanless fashion, she has changed her mind a dozen times about what to wear, who to be. Decisions, decisions. Have I mentioned before that everything is complicated in this household? Mary Clare, however, decided on her Halloween costume rather quickly. Mom gave her a glittery cupcake dress-up costume a couple of weeks ago as a little surprise, complete with a cupcake wand and headband. As soon as MC saw it, she shrieked, “YAY, I can be Kerry Perry for Halloween.” At the moment, I laughed, unsure if I should be concerned that my little girl knew who Katy Perry was. Then I realized it was probably worse that she wanted to be her. I think it’s the obsession with candy. When you ask her what she wants to be for Halloween, she’ll say, “California Girl.” I think we’ll just go with a purple hair cupcake fairy.
And as promised…photos! I’ve posted and taken photos tonight from my iPhone in the dark and in my bed beside the girls in my bed. This is as good as it gets for now.
Seriously, this is how much they move when they sleep. Not sure when Mary Clare shed her top, either.
We are heading to the beach this weekend to enjoy the ocean while we still can! Maybe, I’ll have some time to get better photos of the girls!
Guess who weighs 29 pounds?
Think the Nutella has anything to do with that?
Please note: When Mel first read this post, he asked, “Will anyone know what Nutella is? Let me explain… When I was a student at USC, I was in an Advertising Campaigns class with a tall, strikingly beautiful Brazilian. Week after week, we had to sell a product of our choice through our campaigns, and week after week, we sat captivated as we listened to Stella speak of the rich goodness of her beloved Nutella, a hazelnut spread with milk and cocoa. It rolled off of her tongue so easily and sounded so delightfully sinful, as only she could make it sound. I’m not sure if it was my longing to become like my friend with her amazing accent, or her fantastic ad campaign. Either way, since then, I’ve been hooked. And guess who else is hooked? I’ve even taught Mary Clare to say, “NOO-tella” in her best Brazilian accent.
The Woodham Crew
My baby brother, Alston, baby sister, Kate, Mary Clare, me, Mel, my mom, “Nonnie,” my dad, “Bubba,” my younger sister, Kacy, McCanless, and Kacy’s fiance, William.
We had a family reunion this afternoon for my mother’s family. Lucky for us, it was at Lawton Park here in Hartsville, so we didn’t have far to go. We had about 50 gathered from as far as Florida all the way to North Carolina. It was a beautiful, sunny day with so many laughs and memories. We younger cousins had a fun time meeting everyone!
Despite my mother having four children and her mother having four children, and her mother having five, we have a pretty small extended family. (With big personalities, which makes up for the small number of offspring!) As soon as I finish uploading all of my photos, I’ll post them so everyone can see exactly where my children get their blonde hair! I always get asked where on Earth Mary Clare gets that white head of hair! Lots and lots of blondes on this side!
Gaineys, go to www.babypenningtonphotos.shutterfly.com to view and order photos!
Mornings for the Pennington Girls…
are going smoother as the days roll along. Sometimes.
I’ll admit both of my girls need lots of TLC and quiet time in the wee hours…
…and I have to be very delicate with my not-so-morning girls while Daddy sleeps in. (I’d rather NOT have three not-so-morning people awake at once.)
And although I’m certainly a morning person, which makes for (ahem) “interesting” mornings, I’ve had to accept that my girls and hubby are not.
And I love my not-so-morning family.
WE ARE STILL ALIVE…
It has just been quite an adjustment (to say the least) getting back into the swing of things this Fall. Homework, alarms, lunch bags, snack bags, dance clothes, school clothes, cheerleading and school days are slowly becoming routine. Slowly. Surely. Did I say I was ready for this? I’ve changed my mind.
First Day of School 2010
McCanless and Mary Clare jumped up and out of bed this morning. Well not really jumped, but it was unusually pleasant. I’ll take it! Neither would eat the cinnamon rolls I baked, nor would they say much, but I knew they were eager to begin the school year. They both wore the clothes they had chosen the night before and we actually walked out of the house by 7:40 without a hitch! Mary Clare fell asleep on the way to school, but walked right in when we arrived.
Ready or not, here we come! New pink book bags, new pink lunch packs and one pink lady bug nap mat for Mary Clare.
…and she had to wear pink!
My big girl and new first grader who lost a tooth today at school! Around 9:00 AM, McCanless came running into the office with a big grin showing off her latest gap! This will be #7 for Pixie Lily, her tooth fairy! She was so very proud!
No tears for her first day of 3K. (It probably helps that her teacher also happens to be her aunt.) Good luck with my pinkalicious blueberry, Ms. Kate! One day down. Only 179 more mornings to go!
Insert song, “I Say a Little Prayer for You.”
I always have a song in my head. (A funny little quirk about all four of us is how we’re always singing. The girls are always singing a tune no matter where they are. Mel and I both begin the same song after we see something or chat about something that strikes us-we’ll both belt out the same song simultaneously. I guess 10 years of marriage will do that.) Anyway, I woke up this morning with this song in my head as I dragged my fanny out of the warm comfort of my bed with Mary Clare tucked nicely in my neck. I’m on day two back to school and I’ve hit a wall. Only day two.
I have neglected washing clothes, running errands, my blog, balancing checkbooks, probably paying bills and I often find myself stopping EVERYTHING to try and remember what day it is and if I’m supposed to be somewhere like dance, church or a birthday party. I guess that’s why I woke up with said song. I have been busy at school accomplishing great things there and have even re-created the THA website. (Okay, so Mel did that, but I am in charge of it. WebMaster, they call me, which is hilarious. I have no idea about anything regarding web programming or code and I’m certainly not a master of anything.) It is coming along nicely, but if you’ll notice I am a little bias. (All of the photos are of the girls.) I have made a disclaimer at the bottom of opening page that explains we are a work in progress.
Back to the song. Getting me up and out of the door by 7:45 is one thing. Getting me and McCanless up and out of the door 7:45 was another. Getting me and McCanless and Mary Clare out of the door by 7:45 alive will be comical. So please, pretty please say a little prayer for us. Thursday is the big day.
Whatever helps, right?
I gain 10 quiet minutes for my grocery run and she gains a bit of weight as an added bonus!
Maybe.
Reality Check
My friend, Steve, at The Funky Heart makes a guest appearance on Broken Hearts of the Big Bend, a CHD blog. It is a sobering and insightful article. I never thought the day would come, but it is so easy as a mom, to get comfortable and forget about my child’s special heart. I’m so thankful that others have walked this walk and can keep me and Mary Clare in check and remind me that I am a heart mom, not simply a mom. I must be mindful for her health and be thankful for every single minute that God allows me to spend with her.
“My “secret” to living so long with a congenital heart defect could very well surprise you. To live with a heart defect, you have to first make peace with the fact that your defective heart will one day give out.” Steve Catoe, The Funky Heart
Game Time…
1,2,3…Dance, 2, 3…Here we go!
McCanless is in ballet this year, and I couldn’t be more thrilled!
I love ballet, and love that she is interested! She is in the Petite Company again this year which means ballet and competition jazz.
Mary Clare is in Broadway Babies, perfect for her!
Any Advice?
So, it’s 9 AM, Mary Clare just cried out my name (from my bed) and yelled for me to come get her. She needs her snuggle time to wake up. McCanless is still asleep and I have yet to shower. McCanless has successfully slept in her own bed for four straight nights in a row, but bed time is not something she looks forward to and has become quite a fantastic procrastinator. Drinks of water, under bed checks, hugs from Mommy, last kisses from Daddy and bathroom visits have been keeping her awake well past bedtime. I haven’t even begun breakfast and I have no idea what is on the docket for today other than helping McCanless finish her “Big Scoop” book report and Mary Clare’s first day of Broadway Babies, her new dance class. Next Thursday will be a rude awakening from our usually unscheduled summer days together! I’ve somewhat tried to jump start our days early and get a bedtime routine going, but it just isn’t working. Looks like we’ll be hitting school Cold Turkey! Wish us luck!
The Funky Heart Explains…
a bit about the Fontan. No wonder I have trouble explaining what it is exactly. Even the Funky Heart, who had the Fontan, has trouble!! I feel better!
How to tell Summer is coming to a close:
McCanless and I will start on the first of many (I’m sure) first grade projects today. She has read her summer reading, thanks to my sister, Kacy. Who just so happens to be a first grade teacher. (Not McCanless’ first grade teacher, unfortunately.) Today we will attempt to conquer her “Summer Poster” and maybe get started on her “Big Scoop” ice cream book report. I’ve ordered all of the photo prints from Walgreens and we’ll venture out to Walmart to gather necessary craft items. I usually try not to take the girls to Walmart unless absolutely necessary, however, this is her project and although I’m such a project girl, myself, I do “let it go” when it comes to her work. McCanless is the kid who shows up to school with the obviously completely homemade, completely kid-done homework, projects, and take-home work. 100%, I promise. Oh, how I’d love to jump in there and do it myself sometimes. Not because I want hers to be perfect, but because I just love projects!
We have also started bed time boot camp. Baby steps, anyway. We have made McCanless sleep in her bed for two entire nights in a row so far! And there have been no tears, screams or fits, amazingly! I do have to allow her to listen to music while she sleeps. (Whatever works, right?) Funny, mom allowed us to listen to music at night and I learned every book of the Bible this way. I guess listening to the same song over and over and over will do that. I still know them all in order to this day, as long as I sing that same song! I just may have to find that CD! Mary Clare is still in our bed. Every. Single. Night. The little stinker will NOT stay in her bed. This week, we’ll work on placement in own beds. Next week, we’ll tackle actually getting into those beds before 10 P.M. Baby steps.
We still have not heard from MUSC regarding Mary Clare’s surgery. Emerson has a surgery date for September and hearing that news was completely sobering. I’m not ready for that, but I know it is inevitable. We’ll travel to Emerson’s 3rd birthday party in Georgia this month and we are really looking forward to that! Erica, Emerson’s mother, and I have not missed a birthday party yet!
We still have a couple of weeks before the first day of school, but school supplies have already been delivered to classrooms, I’ve gotten our Gamecock gear ready, Halloween costumes have been decided upon (and I’m sure will change a dozen times), and first day of school outfits are ready! Bring it on!
“Look, Mom, a hermit crab!”
We had an impromptu science lesson this morning.
Because this is not a hermit crab.
I guess my beach baby just got confused. Another funny story behind the new pet snail, Margaret, happened when I told McCanless that Mary Clare found a snail. She ran straight to the bathroom to check it out. Nope, not in the bathroom, McCanless. Outside. In nature. Where most critters live.
Camp Invention 2010
I snapped these photos this morning of McCanless and her pal, Eliza with my iPhone. Today was crazy hair day at Camp Invention. We had braids all in McCanless’ hair and spray painted them hot pink. Mary Clare didn’t attend Camp Invention, but found it necessary to also spray paint her ponytails hot pink. It may be next week before the pink comes out of her cotton top.
McCanless is really having a great time this week. I can’t wait to see her showcase on Friday. Last night she was telling me all about her latest invention. She wanted to spray paint her tiny clam shells pink (the shells we found recently) and hot glue them to a wooden board, also decorated. The individual shells would be a place for each of her earrings. I thought it was a pretty good idea for a 6-year-old. Maybe not as “techie” as her Governor’s School counselors would hope for, but pretty ingenious, I think!
Inventors can be cute too, see!
One fish, two fish, red fish, blue fish…
Reese, Edward, Kaitie, Mary Clare and Gracie
Mary Clare, Reese, Edward, and Rainn
She passed! She is still not quite self-sufficient in the pool, but she’s close! Maybe next year! Way to go, baby girl! Mommy had such a great time watching you and all of your little guppy pals learn to swim!
And who doesn’t go to the pool in heels?
We are still enjoying the last days of July at the pool, with pom poms and heels most days, of course. McCanless is at Camp Invention at the SC Governor’s School for Science and Math this week, so Mary Clare and I have had some time alone and time to get ready for school, which is right around the corner! We’re trying to fit in as much summer as possible right now!
I can’t wait!
I can’t wait to get my hands on this book! I have been following Paul Cardall, award-winning pianist and CHD survivor, since well before his heart transplant and it has been amazing to follow his miraculous life and heart journey. He was born in 1973 with tricuspid atresia and transposition of the great arteries. The surgical plan to manage his CHD ultimately led him to the Fontan surgery, which is what Mary Clare will soon face. He wasn’t born with HLHS, but ended up with a heart similar to Mary Clare’s. His heart worked very hard post-Fontan most of his life, but eventually grew tired and sick. In August of 2008, as a young husband and father, he was listed for a heart transplant and spent many months waiting for a heart . On June 10, 2010, less than a year after his transplant, Paul hiked Mount Olympus! I can’t wait to learn more about him! What an amazing life!
Summer Update…
I can hardly believe that July is coming to a close. We have had such a busy and fun summer, and we still have so much to pack in! After an early morning painting session today with Mary Clare, I packed her bags and sent her off with Nonnie. They are driving to Hilton Head this morning to meet McCanless and Mimi down there for the weekend. Mimi took McCanless down there on Wednesday. Two girls with two grandmothers all weekend long. I’m nervous about how long it will take me to sort them all out when they return. McCanless called me last night on the way to Harbor Town to see Greg Russell play, only after a day long shopping excursion, lunch with friends and ice cream for dinner with Mimi. She is in heaven! (They did eat real dinner after ice cream, of course.) They have beach and pool trips planned and a visit to the Children’s Theater to see Peter Pan. I know they will have a ball. I’m so proud that my girls are independent and can handle being away from Mommy and Daddy sometimes. They both loved to travel and go with family and friends! (Lucky us!)
The girls are so ready for school. They both will be at Thomas Hart Academy this year. It amazes me. I have been teaching at Thomas Hart since Mel and I were married and always knew I wanted my children to be there with me. It is hard for me to believe we are at that point in life. Wow. Time truly flies. I was offered to teach again this year, but I think I’ll stick to the office until Mary Clare’s surgery is complete. Last year, I opted to work in the office a few hours in the morning because I thought her surgery would happen during the school year. I feel that it will be so much easier to leave the office rather than three classes of students. We’ll see. I just know that I love being with the girls at school. First grade and 3K. Wow. It still amazes me.
I have yet to hear from MUSC regarding Mary Clare’s surgery. Emerson, her best heart friend will have her Fontan in September. Please keep her in your prayers. Our families have certainly been on this journey together almost from Day 1. I specifically remember the very first time I spoke to Erica, Emerson’s mom. I was sitting in my car in a Target parking lot. A mutual friend connected us and gave her my cell phone number. We were both pregnant with our heart babies and we talked and talked and cried for over an hour. We have been keeping up and keeping in touch for over 3 years now! Emerson is a couple of months younger than Mary Clare and they have both done amazingly well! We were both hoping that their surgeries would be around the same time so we could be at MUSC together. We wanted not only play partners for the girls, but emotional support for each other. It looks like Mary Clare’s surgery will be postponed a bit, however. They just want her to be closer to 30 lbs. Do you know how hard it is to gain three pounds when you are only 27 lbs? If only it were that difficult for me.
Mel is keeping very busy, as usual. He has completed his firefighter training and is now an official Darlington County Volunteer Firefighter. He is working on his letterpress business, still has his hand in Pennington & Bailes and being Mayor is always interesting. He’s also doing a bit of design work here and there. He’s a pretty great dad and husband, too. McCanless is growing up before my eyes and continues to love to draw and paint. (Little sister is following suit.) McCanless, however, has to have her down time/alone time. She is so passionate about everything she does. She reminds me so much of Mel, and yet so much of myself. A friend once told Mel he was like a human light switch. One moment he was wide open, literally with words, movement,etc. Then the next moment, he was completely OFF, zoned out, quiet, contemplating, still. This is so McCanless. Other parents, teachers, adults comment on how mature and well-behaved she is. She wouldn’t dare disappoint and seems almost shy around others. (Almost.) She is so interesting.
Mary Clare is my little girly-girl firecracker. Like McCanless at age three, she knows exactly what she wants and does things her way. She is so independent and thinks she is McCanless’ age. She loves to sing and dance and dress-up still. She reminds me so much of McCanless, but with a bit more gusto. (If that is even possible.) My sister said she reminds her of a recent Sour Patch Kids commercial. (Sour Patch Kids is a type of sweet and sour candy.) The commercial shows a Sour Patch Kid trip a little boy on a bike, making the boy crash badly, then turns around a helps him up and hugs him. Sour then sweet. That is certainly Miss Clare. She will play for hours with her Barbies and her dolls. Unlike McCanless, she loves alone play and never takes the time to watch television. She has such a vivid imagination and I often hear her twirling and talking and singing aloud in her playroom alone. She loves all things pink and sparkly and princess and right now her plan is to be a pink, sparkly cheerleader for Halloween. It’s never too early to start planning, you know.
Mimi’s 60th Birthday!
Aunt Liz planned a Haarlow family weekend for Mimi’s 60th birthday at her “new” husband’s family lake house, Lizard’s Thicket Fish Camp on Lake Murray. (Lizard’s Thicket is their yummy family business.)
McCanless and Molly got into Mimi’s make-up!
Mary Clare loved using the pink Barbie fishing pole…
until she saw the fish she caught.
Haarlow Cousins
We recently spent a long weekend at the lake with our Haarlow family for Mimi’s 60th birthday! We had so much fun and I have so many wonderful photos to post, but I just couldn’t wait to share this one!
Andrew 7, McCanless 6, Molly 5, Sophia 4, Mary Clare 3, Will 1
2010 Swimming Lessons at Prestwood Pool for Mary Clare
Reese, MC, Grace, Rainn, and Heyward all wait for their turn with Ms. Gretta.
Mary Clare loves swim class!
Hold your breath, Mary Clare!
McCanless began swimming lessons last week only to drop out after the very first class. Apparently, she knows everything there is to know about swimming, so she decided not to attend this year. (She was a bit bored in her class, so I didn’t fight it.) She would much rather be Mary Clare’s swim class teaching assistant.
July 4th 2010 Week with the Woodhams
Annual golf cart parade…
Kacy and McCanless took ’em down with the water guns!
Mary Clare wasn’t a fan of the fireworks on the beach, so Nonnie, Kate and I took her to the Yum Yum Shop for one of her favorites, ice cream!
I was so proud of McCanless. At the water park, she went on every single slide that “we big kids” went on. I was too busy sliding and riding with everyone to take many photos, but she held her own and loved every minute of it!
Beach bums
As much as McCanless loves Skee Ball, she has a hard time keeping the ball in her own lane!
Spa night!
After a fun couple of weeks of beach, sand, slides, rides and laughs, we packed it all up and headed home. It was yet another year of fun memories!
Before the Morning
Here is a video from a blog of a heart friend that I have been following for a while now. She posted a video of a song that I have heard before, possibly for the first time on another heart blog. I love the song and had no idea that is was about a child with HLHS until reading her post just this morning!
Here is the story behind the song…
Here is the song in it’s entirety…
It’s Summer… REVISED
and we have been busy! The girls’ team just returned home from nearly two weeks at the beach. (Daddy came when he could.) We are sun kissed with sand still stuck to our bottoms! We had a wonderful fourth of July celebration with the Woodhams (my crazy family), went to water parks, amusement parks, ate fudge for breakfast (only once), and are so far off from any sort of normal schedule! It’s wonderful! (If Mary Clare didn’t gain wait this month, I give up!) We even went wedding dress shopping with Kacy and she found the most perfect dress! McCanless was in awe each and every time Kacy came out of her dressing room with such wonderful “real” princess dresses! Mary Clare was just as content standing on her own “stage” in front of the wall sized mirrors adoring herself and twirling about.
Today, while Mary Clare and McCanless visited friends, I completed the daunting task of unloading/unpacking/washing/cleaning/restocking the house, etc. (I have no idea what Mel does when we are away.) I’ll get around to potsting lots of fun photos soon! This week we have swimming lessons at the pool and Thursday we are off to the Williams’ Lake House for Mimi’s 60th birthday bash with the Haarlow gang! Yay, we love summer!
I forgot to mention that my sister, Kacy, is very recently engaged. (Hence, the aforementioned wedding dress shopping excursion.) I was lucky enough to be in the know and was able to help out just a bit. And it all happened in my front yard! The girls were able to watch William propose! They were glued to the window! While I do stick to writing only about the girls’ shenanigans on my blog, I must say it was a family event. Congratulations, Kacy and soon-to-be brother-in-law, William!
I will warn you, however, when you enter into this family, as Mel will tell you. You not only marry my sister, Kacy…
You get Kate…
and Nonnie…
and the entire girls’ team…
with a blueberry on top!
Bubba, Mel and Alston are an added bonus! Welcome to the family, William.
Cheers!
Happy 4th of July!
We are enjoying another year of Fourth of July fun with our family at the beach, which means lots of sun, laughter and food! Hope yours is just as wonderful!
Watch ABC tonight…
ABC has a new Thursday night spot, “Boston Med,” a television documentary series with “cutting edge medical cases encountered in America’s top hospitals.” It is an eight-part series, which premiered last week, and is on at 10 PM EST. Tonight’s documentary features a family that gives birth to a HLHS baby! It may be interesting to see how our experiences compare. Thanks to Chase’s mom for the info!
Pinkalicious turns three!
Three-year-old Pinkalicious with her Pinkalicious doll.
Mimi’s mega water shooters were a hit with the big boys! (Especially with Daddy and all of the Pinkalicious uncles!)
It was Hot, Hot, Hot.
Only pink juice would do!
Two Pinkalicious Grandmothers, Mimi and Nonnie!
Surprise! We gave newly engaged, Kacy and William, a mini-wedding cake! We had Pinkalicious cake and Wedding cake! It doesn’t get any better than that!
Emerson, Mary Clare’s best heart friend, and her Mommy!
Pinkalicious Princess Pails filled with pink bubbles, pink flamingo suckers, pink candy, pink swimmies, a Pinkalicious Pool Party CD (made by Daddy) and goldfish crackers, Pinkalicious’ favorite treat!
Happy 3rd Birthday, my sweet Mary Clare. I hope everything was as pinkalicious perfect as you hoped it would be!
“The table went boomp!”
Mary Clare caught in action. All I heard from the kitchen was, “Sorry Mom…”
Happy Father’s Day!
We love our fun Daddy!
(Who sometimes pushes us to our limits, but always makes us laugh!)
Dear Girls,
Mommy is heading back to the beach for the weekend and Mimi has saved the day! The only way I could ever get out of NOT taking you girls to the beach with me is if Mimi takes my place here in Hartsville! Daddy and I have a wedding this weekend and I’ll be sure to tell you all about the princess bride, Julia. I know you’ll want to hear all about it!
You two and Mimi are already on your way to the pool right now. I can’t wait to hear all about your adventures in the yard and at the pool and see what you girls get into! It’s always a party when Mimi is around! (Bapa,too.) Have fun and I miss you already!
Love, Mom
P.S. World… Thank you all for your sweet words of encouragement and constant support! Remind me to keep busy and stop “thinking” so much! (See post below.) I’m so happy to have my girls and I’m thrilled that Mary Clare leads such a fulfilling life. Every. Single. Day. How awesome is that simple fact? I know that everything is totally out of my hands and I try to keep myself very busy so I won’t worry, but it certainly helps to vent every now and then! (My blog is a diary of sorts, but it’s easy to forget sometimes that it is open for the world to see!) Thanks for everything.
We have had quite a fun time on our impromptu vacation! (And, of course, I’ve forgotten my camera!) We’ve been relaxing by the beach and pool every day and eating out at fun new places for the girls. We head home tomorrow, so we are packing in as much as possible. Daddy usually isn’t able to come to the beach with us during the summer, so the girls have thoroughly enjoyed playing and spending time with him here. Last night we went to Broadway at the Beach, which the girls have been countless of time before, but this is the first year they both were really able to enjoy it! We stopped by the mini-amusement park first and let the girls ride until their hearts’ content. It was so nice to have both girls together on the rides. Mary Clare is finally tall enough to ride on most! She was such a big girl and loved having her big sister with her. We also strolled through the shops and bought candy and t-shirts. We definitely played tourists on this trip. We watched the Fudge Shoppe Man sing and ate samples of yummy fudge. We strolled into the Magic Store, found a pearl in an oyster, played with kites. The girls ended the night at the splash pad, jumping in and out of the ground water squirts. We drove them back to the Grande Dunes around 10 pm, soaking wet! All three are now sleeping-in this morning, as I’m enjoying coffee alone on the terrace listening to the waves. Thinking.
Last night as I watched Mary Care zoom by me in her mini airplane laughing so hard tears were streaming, I couldn’t help but think of what is ahead of us. The mother in me prayed a silent prayer and pleaded to God that this will somehow make it up to her. Maybe if she has the most fun summer, she’ll not hate me for what I know must be done to her. I’ve noticed Mel has also been thinking this way. He has promised to paint her toenails everyday while in the hospital this fall. He told her she could pick out 40 different colors, or however many days we are there, so they can be a different color everyday. He also promised her a trip to Disney World to see all of her beloved Princesses afterward.
How can I do this again? How can she do this again? Yet again. How am I going to be able to hand her over this time, not just for a heart cath, a simple procedure by comparison, but a surgery which rips her tiny body apart? How am I going to be able to watch her on a vent again? Lines, leads, monitors. All over again. Having her torn away from me at birth and sit by and watch all that she went through, then again to have the same thing happen merely 6 months later was horrific. She has to do it all over again, but this time she will ask. Why is this happening? Why can’t we go home? Why do I hurt? Why can’t you put a bandaid on it? These are the questions that haunt my dreams.
We’ll continue to go to the beach. We’ll have a marvelous summer. We’ll go back-to-school supply shopping for 3K. We’ll face the inevitable. And I will pray. I will pray that she forgives me. I will pray for her strength, her survival, her understanding. She will be going through more than I will have ever gone through in my entire life, or ever will go through, so I’ll will be there with her every moment. Praying. I will carry her through this as God carries me.
McCanless and Mary Clare’s First Trip to The Melting Pot!
…and they loved it!
I’d have to say their favorite was the chocolate fondue dessert!
Last Minute Vacation
We decided to head to the Grande Dunes Resort in North Myrtle Beach with Mel today. He told me just last week that he was being inducted as Secretary of the SCFDA (South Carolina Funeral Directors Association), so when I realized it was at the Grande Dunes, I packed our bags! Right now the girls and I are out by the beach enjoying virgin daquiries and a “big girl” Bumpin’ Bananas! Poor daddy is stuck in a meeting, but will join us shortly! We are loving summer!!
Saddle Ridge Ranch VBS 2010
McCanless and Mary Clare attended Vacation Bible School at First Baptist this year. I have such fond memories of VBS at First Baptist, too, and I’m thrilled that they were able to attend. The annual photo was taken in the exact same spot that it has always been taken, on the steps of the old chapel. (I’d love to find one of my old ones and compare. Mel is probably in them, too!) We have such strong ties to First Baptist Church. I was dedicated as an infant, baptized, grew up and was married in this church. We have now been members at St. Bartholomew’s for our entire married life and have fallen in love with our church and our church family, but will always have a special place in our hearts for First Baptist. The girls had a great time, as I knew they would!
Saddle Ridge Ranch was the them and we dressed the part, of course!
Mary Clare was not thrilled to be on stage, so big sister came to the rescue.
Trying to get a photo of three Pennington cousins is almost impossible. This was as good as I got!
Mary Clare and Reese, aka the twins. (All week long the helpers assumed that MC and Reese were twins. They clung to each other and played/fought/loved each other like siblings.
1, 2, 3, Jump…
I don’t think it’s the 95 degree heat that’s so bad. It’s the 100% humidity that makes it feel like “sticky, jungle, can’t breathe, heat index of 115, wish all you had to do was sit in a pool” weather that gets to us. So, guess what we do? We sit in the pool. All. Day. Long.
You would never know it by Mary Clare’s excessive flotation devices, but she is really coming along with her swimming. She isn’t afraid of the water in the least, and will often take off her arm swimmies and practice with me. She will jump off of the side and (with a bit of underwater pushing from Mommy) will swim to the shallow end steps a few feet away! She certainly isn’t swimming alone by any stretch, but I think she is making great progress and just might have it by the end of the summer! McCanless learned to swim alone in the summer of 2007 when she was 3 1/2, when Mary Clare was born and we were at MUSC. McCanless was staying in Florida with Sissy and Uncle Kurt. They have a pool and Uncle Kurt worked with McCanless until she had it. I was so proud of her. Now, she is quite the swimmer. Even today, while at the pool, someone asked me if she was on a swim team! (Not yet.) So, Uncle Kurt, are you ready for swim camp with Mary Clare?
What Cath?
On Friday, to celebrate Mary Clare’s fantastic cath results, we did what we do best in the summer! We hit the road and headed to the beach!
We were told to not to submerge Mary Clare’s catheterization insertion sites for three days.
That didn’t mean no splashing,
or exploring,
or running, right?
Thanks be to God.
Mary Clare’s Heart Catheterization
Mary Clare was admitted at 7AM and was 2nd case, which meant lots of waiting. To help us pass the time, she had her EKG and echo before she was taken back to have her cath. This was the first time she was somewhat calm during her EKG, so I snapped a photo! (And she has had many EKG’s!) Usually, I’m helping keep her still by counting her chest leads, singing and attempting to distract her. (Trying to keep a 2-year-old distracted and still with 15 long leads stuck to her chest can be tricky!)
Mommy had to help with the echo.
After a while, Kacy joined us to help keep Mary Clare entertained! A great surprise and a huge help to Mommy and Daddy!
After books, Barbies, strolls, singing, playing…
…coloring, cartoons, hair-dos, and more Barbies, she was given Versed around 12:00 to help relax her before they took her back. It all happened so fast once they gave her the Versed. One minute, we were all rolling at how silly she was and laughing with her, then the next minute the cath docs came in to play with her and just check on her, so I thought. They picked her up and said, “Lets go out here to ….,” which is all I remember. My heart dropped, time stood still and I was heartbroken, relieved and terrified all at once. I will never get used to that. I was so happy that she wasn’t crying for me (which is my biggest fear), but I said nothing to her before she walked out of the room without me. I didn’t have a chance. But then again, what do you say to your 2-year-old who is being taken away by a group of scrubbed doctors and nurses she doesn’t know? I had complete trust and admiration for each and everyone on her cardiology team, but she didn’t understand who they were or what they were doing for her. That is one of the hardest parts of all of this. Looking back, I know why they scooped away my little blueberry so quickly and I’d love to go back today and thank them for it.
Around 3:00, we got the page that she was extubated and heading to recovery! She slept for a short while and woke up with a vengeance, ripping off her oxygen mask and demanding her, “Papi!” She was supposed to sleep for most of the 5 hour, post-cath observation, but we all quickly realized that she was not a happy camper, was wide awake and ready to get out of MUSC! It was tough trying to explain to her that she had to keep her pusle Ox on, IV in, leads attached and her leg still. Her cardiologist came by around 6:00 PM, saw that she was certainly holding her own and doing well, other than being tethered to the wall, and said we could go home an hour early!
By this point, Mel was completely out of it, but we managed to be discharged by 7PM! Her cath results were great and she is “Fontan ready.” She had two catheter insertion sites, one in her groin and one in her neck. Her pressures and function looked great and nothing extra was done, nothing to balloon or stint. They typically coil off extra collateral veins during these kiddos’ caths, and hers weren’t significant enough to even do that. (The growth of the extra veins are the body’s way of responding to lower O2 levels, an attempt to increase oxygen flow to the heart.) Her cath yesterday was simply a diagnostic cath! Although, Dr. Bradley, her surgeon, would like her to be closer to 15 Kgs, it looks like we’ll definitely be back down here in 3-6 months for her Fontan. I’m hoping all of the birthday cake this month will add a few extra pounds!
And guess who was starving and ready for noodles once we walked out of MUSC? So in her new mermaid costume, barefoot and bandaged up, we headed to Fleet Landing, of course!
MUSC Heart Catheterization (& updates)
After a long, but fun morning of playing Barbies, singing, strolling around MUSC campus and waiting, Mary Clare finally went back into the cath lab. We were admitted around 7:00 AM and she was taken to the cath lab around 12:00. I’ll update as we hear news!
On a funny note, MC was given Versed a few minutes before they took her back into the lab. We all laughed as she sang slowly, and tried to wink at her nurse, Kate. Mel even asked her to whistle, which only led to her drooling and laughing. She sang, “The Caterpiller” song that Ms. Jordan taught her and stared at her little fingers as the inch worm. She was too funny. She had the entire cath lab rolling.
2:25 PM UPDATE 1: We received a page from the cath lab about on hour ago. Mary Clare had no trouble being put to sleep and has been intubated. So far, so good. Thank you all for your wonderfully kind words of encouragement and prayers for our sweet MC! Also, a heart catheterization is simply a way for her cardiology team to really get accurate numbers of her heart. The readings from today will help the team decide when to do her third surgery, the Fontan.
UPDATE 7:00 PM. MC was discharged and we are heading home! Cath went well!
UPDATE 9:00 PM. Heading home! I couldn’t post much earlier because Mary Clare was NOT a happy girl! It took all we had to keep her somewhat calm! She is still awake for now, but I’m sure we have a nice quiet drive ahead of us. The cath was a successful one, and diagnostic only! (No additional procedures were necessary!) A surgical request has been submitted and we are looking at 3-6 months for her Fontan. I cannot thank you all enough for the support and most importantly your prayers! I’ll be sure to post lots of photos later. For now I think I’ll join Mary Clare as she naps. It’s been a long day!
Tomorrow’s the day!
Tonight, after Mel’s council meeting, we’ll head to our beloved Charleston. Mary Clare will have her heart catheterization tomorrow morning at MUSC. We check in at 7:15 AM, as she will be the second case. Generally, a heart cath takes around 3 hours, unless they must perform an ablation or any other “clean-up” work with her little half-heart. We’ll be driving home after she recovers, so hopefully will be home tomorrow evening. (If they must perform any other additional procedures, she’ll have to stay.)
I’ll have my iPhone and, of course, will be close to the computer lab in the waiting area. Once she is in the cath lab all Mel and I will have to do to keep busy is wait, pray that all goes well and update you all, so don’t worry, I’ll be updating as often as we are updated. I’m hoping for a clean cath, great findings and a future date for her Fontan, preferably much later than this summer!
Please keep my little blueberry in your prayers tonight and tomorrow!
Happy Memorial Day 2010
“We,” the girls’ team, spent all morning getting housework done, lunch packed, dinner planned, and sunscreen on. Fully prepared for an entire day at the pool, “we” loaded the golf cart and headed for Prestwood Country Club with everything but the kitchen sink. As soon as we walked through the gates, we heard the lifeguard yell, “Thunder!” So as we wait for the sun to emerge once again, we’ll enjoy our Memorial Day picnic in the den. Happy Memorial Day!
Update: We headed back out to the pool after our indoor lunch picnic only to swim for about 10 minutes when a dark cloud came right out of nowhere and dropped the sea onto us. We tried to wait it out with a few other families while playing tea party and eating each other’s snacks. After about an hour and just as Mary Clare fell asleep, we gave up and piled back into the golf cart to zoom home in the monsoon. What a way to spend Memorial Day.
As the sun is now beginning to beam out from under the clouds AGAIN, I’m tempted to call our friends and reschedule our Memorial Day cook-out??? Hmmmm...
Just want to share…
The link below takes you to a post that is written by a mom whose beautiful son, Asher, recently conquered the Fontan, the third staged surgery for HLHS kiddos. (The third surgery Mary Clare will soon face.) Asher is doing well and I love keeping up with him. His mom is “real” and I thoroughly enjoy reading her posts. Today, her post is everything that I live and know and feel and believe with all of my being. I have never met this mom, but I feel so close to her, as I do with every other heart mom. Instant soul mates, we all are. We don’t have to know a thing about each other, other than that “she gets it.” So here it is, and boy, does she get it.
Embrace Today
Date Night with Daddy
Mel took the girls to a movie last night to celebrate the last day of school! Today is the last day for McCanless! I can’t believe she is now officially a 1st grader! After dolling up for her “date” with Daddy, which meant plundering in my make-up bag, McCanless decided to dance and pose for the camera…
…and of course, little sister, my new 3Ker, had to join in!
Sometimes the most fun is accidental…
During an impromptu play date to Prestwood playground after school this week, the gang decided to take a swim…
and who are we to stop them merely for lack of swimsuits?
The geese didn’t seem to mind.
5K End-of-Year Party!!
There were some wild and crazy almost 1st graders at FunDayGo last week!
Including my own, McCanless! I guess they were a wee bit excited about the school year coming to an end. Can you tell?
Sugar Baby thought the extra shot of pink sugar would help her achieve maximum slide…every time.
Ready?
Go! Never once, did she drop her pink sugar straw.
Can you spot it?
This is a photo of a portion of McCanless’ 5K class canvas submitted for the THA Spring Art Expo. It took me a while to find her tiny printed name and drawing…can you?
She writes her name so tiny sometimes, I can barely read it.
I do love her pink dinosaur!
Jump Rope for Heart
I had great plans of getting fantastic photojournal-ish type photos of the American Heat Association Jump Rope for Heart event and Blood Drive at Thomas Hart. Not only for my blog, but perhaps the Hartsville Messenger. I even thought about submitting something to the State, a lofty aspiration, but why not? This was a huge event in honor of my Mary Clare, and McCanless had such a great time keeping up with all of the very generous donations for her cause. Surely everyone would want to know about it. Right? Then I realized that I would have to do two things: 1) find time to write articles and 2) photo willing subjects. Neither of which would happen.
McCanless refused to even face my camera to show off her cute double-dutch worthy attire.
And Mary Clare, although perfectly content on every single middle school girl’s hip, wouldn’t dare smile. Not even once for my camera.
She even broke down in the middle of the gym floor because she wanted a “pink snow cone, not a green one.”
It probably didn’t help matters when I gave blood, just as I have so, so many times before, immediately before the Jump Rope event. The event that was held way out on the soccer field in the 95 degree , hot and humid SC spring weather. I gave blood, boastfully sat for a mere minute, grabbed Mary Clare and headed out to the field with my Nikon. I sat down on the bleachers and passed Mary Clare on to a few students and blacked out. So instead of taking photos, I stared out into space. Literally. Needless to say I didn’t get my award winning photojournalistic shots I originally hoped for, but we had a wonderful event to spread awareness for the American Heart Assocation and even beat our last year’s record for pints of blood donated! Way to go, THA!
Red Cross Blood Drive Today!
Today is the annual THA Red Cross Blood drive in honor of Mary Clare! Stop by THA gym to donate, visit with Miss MC herself and have a cookie! The drive will be held from 12:30-5:30!
Mary Clare’s 2K Spring Preschool Program
First Baptist Weekday Preschool held the 2010 Spring Musical tonight. After the last incident of “stage fright” at her dance recital, I had no expectations. As soon as she walked into the church with her class, she spotted me and just sat and waved, saying, “Hi mommy.” Occasionally, she would lean over and tell her teacher, “That’s my mommy.” 
“Hi Mommy.”
Once again, Mary Clare found something better to do than perform on stage. She climbed up and down the stairs.
Mary Clare and her best bud and partner in crime, Audrey, at “The After Party.”
The “Paci” kiss that Mary Clare and Audrey do every morning when they see each other!
Pinkalicious Girl
I thought I’d test out my Mother’s Day gift last night. (Mel bought me a Kodak flip digital camera to catch my beauties at a moment’s notice.) I was trying to get her to show off for me, but she thought reading her favorite book was far more important. Just like McCanless at age two/three, she is obsessed with all things pink and still loves Pinkalicious.
2010 Dance Recital
This year, both of my baby girls were in the dance recital!! We were all so excited to see Mary Clare’s big dancing debut. We rode to the Center Theater in style on our golf cart, of course!
McCanless back stage before the show began. At the ripe old age of six, this was her fourth recital, so she was ready!
Mary Clare on stage before the show began. She was so excited!
Good thing I got a few photos of her dancing on stage before the show began…
McCanless’ first number, her hip hop dance, “Hot and Cold.”
Mary Clare’s big debut was next…baby tap, “Fuzzy, Fuzzy, Cute, Cute.”
Sitting…
Our MC is on the far left…still sitting.
…and sitting…
MC sat through her entire dancing debut. Oh well, we thought she was amazing anyway and Nonnie treated her to a lollipop bouquet for her fantastic performance!
(Quick costume change for the petites…)
McCanless’ second dance, her Petite Company jazz routine, “Flaunt It.”
… and the big finale with all of the Competition Company girls, jazz “Lady Gaga”
Our tiny dancers heading home after a fantastic show! We are so proud of both of our dancing girls! (Even though our tiniest decided to sit it out this year.)
2010 THA Mother’s Day Program
I was so busy laughing at watching the cute little barn animals, I didn’t get many photos and didn’t even get a shot of McCanless during her “solo.” (Each child had a small speaking part and hers was the final and closing line!) McCanless was a farmer and declared, “Now that we’ve put a smile on your face, our fun-filled farm is in a happier place!” I was so proud!
After the “Barnyard Moosical” we were able to see the special art that McCanless has been working on!
This was my favorite, her Eric Carle piece that she entitled, “The Hoola Girll.”
Field Day 2010
Claire, McCanless, Shea and Bennett
Mel enjoyed field day with McCanless this year! Baby sister wasn’t feeling so great, so she I stayed just long enough just to get a glittery butterfly painted on her cheek then we headed home for a nap!
Moyd Farm
McCanless recently went on a field trip to one of her classmate’s family farm. They have been studying life cycles and are actually hatching baby chicks in their classroom. What is so ironic about this field trip, is that in third grade, I also went on a field trip to the same house and farm. Then, the house belonged to my third grade teacher, Mrs. Watkins. The kids had a wonderful time riding horses, hunting “doodle bugs” and lady bugs, playing games and having a picnic! We will certainly miss Ms. Susie, McCanless’ wild, wacky and wonderful 5K teacher!
5K enjoying the joggling board…
Ms. Susie and a group of kids searching for larvae. I don’t think she realized I was taking the photo. What do you think?
Saturday…
Today, we ventured back downtown and to the Black Creek, Blue Jeans and BBQ festival with Daddy. We ate BBQ, funnel cakes and ironically, watched Smithfield, the pig, paint a beautiful painting!
We also visited booths at the Marketplace, ate lunch at the Rooster with the Moore girls and Fort crew, and headed back to the BBQ festival! The girls are now completely dirty, sunburned and sleeping! A great Saturday!
Black Creek, Blue Jeans, BBQ Weekend…
Black Creek Arts Council is hosting a Black Creek, Blue Jeans and BBQ weekend. Tonight was the kick-off!!
Ironically, Daddy was asked to judge the “Anything Butt” BBQ recipe contest, so we tagged along to help out! (If you know Mel, you know he is the pickiest eater EVER, so we had to tag along to help him out a bit.) After the official taste testing, we walked around Cargill Way visiting with friends and eating everything the BBQers had to offer! They were getting geared up for the Big BBQ contest tomorrow! We will certainly be heading out to the Marketplace tomorrow morning! Those BBQ pits smelled so yummy!
Mary Clare was hung up on the chocolate red velvet cake balls! I loved the Key Lime and Strawberry Cake. (We’re two of a kind when it comes to food, Mary Clare and I. We both have a huge sweet tooth!)
McCanless enjoyed socializing with a friends and dancing with the band! She loved the chicken and dumplins and vegetable soup…oh, and the fried corn! Tonight may have made up for us missing the Taylor Swift concert.
It has been a while…
It has been a while since I’ve posted…so much going on. To give you an idea, just this week, dance pictures and antibiotics have been taken, visits from aunts abundant, flowers planted/yard cleaned, THA Yard Sale collecting, sunny-fun field days, golf carts serviced for summer along with toilet and stove repairs, volunteer firefighter daddies on call, birthday parties, Recycle Plant field trips, caterpillar projects, summer camp planning, summer wishing, summer countdown! Whew, it has been a long week and with the weekend peeking through, we have even more planned! Starting tonight with Black Creek, Blue Jeans and BBQ downtown!
Many of our Saturdays are spent…
Flipping…
and flopping…
with sisters…
smiling at mommy…
and laughing with best friends.
My little super star…
Last weekend, Nonnie, McCanless, Mary Clare and I packed up and headed to the “Up State” for the weekend. McCanless’ Dance Company had a huge dance competition in Spartanburg and she was so ready! I think she gets more excited about competition than actual dance class! She truly loves performing.
McCanless getting into her musical theater costume for her “Flaunt It” routine with the Petite Company. They did an excellent job!
“Flaunt It” on stage
This photo is of all of the dance companies: Petities, Juniors and Seniors. Their “Lady Gaga” routine won first place and Top Overall, which is phenomenal! Especially considering the girls were up against huge, powerhouse studios from across both North and South Carolina! This competition was definitely a step way up from others we’ve been to. I felt like I was watching America’s Best Dance Crew on Mtv. (I’m not kidding.) I was so happy for our own little dance crew! (Can you tell I’m a proud mama?)
McCanless loves watching the older girls. Many nights after her own dance class, she begs me to allow her to stay and watch the “big” girls dance.
Here she is with her hip hop group… Their “Hot and Cold” routine won the judges choice award for “burning up the floor.” They are so cute. (Can you tell the boys are in firemen uniforms?)
After McCanless danced on Saturday morning, we played in downtown Spartanburg.
That evening we celebrated McCanless’ huge accomplishments at Cornbread to Caviar, a great little spot right downtown. Okra, a little jazz band played as Nonnie, the girls and I treated ourselves to fine Southern cousine on the patio, and then headed back to the Marriot for a fabulous girls’ night in and a great night’s sleep! I’m sure McCanless was dreaming of tutus and twirls.
Yay
Here’s to trips to Kalmia Gardens for super fun birthday parties…
sunglasses and hats
Springtime secrets
and the countdown to barefoot summers!
ADD
No, we’re not moving…
but it did take a little help from Bubba’s machinery…
to move this baby.
What is it, you ask?
An Original Heidelberg letterpress, of course.
Mel had a bit of time on his hands so he thought it would be great idea to fly up to Tennessee to pick up a new letterpress machine. While we were sunbathing in Florida a couple of weeks ago, he jumped on a plane with his favorite graphic designer pal and bought this golf cart sized invitation printer and drove it back to Hartsville. We both drove into town simultaneously, so imagine my surprise to find such a fabulous welcome home gift. My dad, lovingly dubbed, “Bubba,” agreed to help unload it and set up , along with McCanless’ help, of course. I can’t help but laugh. Mel has always been facsinated with art and design and became interested in letterpress design a few years ago. I knew it was coming.
I guess his schedule along with his recent ambition of firefighter training wasn’t enough. Now “we’re” into letterpress. Anyone need invitations or cards? (Specially designed by a funeral director, clothing designer/manufacturer, mayor, firefighter extraordinaire.) He is currently working on building and designing his letterpress website.
The Newest Pennington girl…
Last weekend, McCanless decided to save all of the baby turtles in Hartsville. She wanted to go to PetSmart and purchase a huge aquarium, capture as many baby turtles as she could find and save them before they had to cross the dangerous road. (Unfortunately, every year about this time, we find way too many baby turtles who don’t make it into the lake. The mommy turtles love to lay eggs in our front yard, and McCanless hates to find the flattened little turtles in the road in front of our house who don’t make it across the road and into the lake.) Last week, she made it her mission to save as many as she could.
That was until we spoke to Jake, a turtle expert at PetSmart, who told us that once in captivity, the turtles would never learn how to live on their own. Mommy refused to capture a baby turtle and keep it indefinitely, so that was out of the question. McCanless’ dream squashed, much like the poor baby turtles, she cried. And cried. Until we hit the Betta Isle and before us stood a tower of pretty, fluorescent, flowing and girlish fish. Perfect for McCanless. Low maintenance, no huge aquarium, no bubbles, no worries. Perfect for Mommy. Jake even told me that these fish sometimes live in mud puddles, which means no burial services in the near future for us. And so, my little turtle conservationist has turned into an aquatic fanatic. For now.
Meet Natalie, the newest Pennington girl. (Well, we’re assuming “she” is a girl, because that’s what McCanless says she is.) Have you ever met a fish named Natalie? Me either.
Have you ever…
seen a cuter soccer player?
Well an “almost” soccer player.
McCanless has a “beginner’s clinic” this week,
but I think she looks like a pro already, don’t you? Look out, Mia Hamm!
I know Mel has secretly dreamed of this moment. He was quite the soccer player in high school and was offered scholarships to play in college. I’m hoping McCanless will follow in her daddy’s footsteps and be a natural. She is certainly excited, which thrills Mel! Tomorrow afternoon, I happen to have a hair cut appointment and he graciously agreed to help McCanless get ready for her very first day of soccer clinic at THA. She may not know the sport just yet, but she certainy knows how to accessorize! The new pink socks and matching ball were “necessary” for clinic, she said.
Wow…
April 8,2006-McCanless at Chuck E. Cheese’s
April 9, 2010- Mary Clare at Chuck E. Cheese’s
It is amazing how time flies…
Girls’ Road Trip!!
McCanless, Mary Clare, Nonnie, Kacy, Kate and I hit the road to Indiatlantic to see Sissy! We had so much fun staying up late watching Mama Mia and New Moon, eating ourselves silly, getting sun burned, taking outdoor showers and singing all week long. We have the best family in the world and my cheeks still hurt from laughing so much!
As soon as we got to Sissy’s house, the girls dove into the pool!
Sissy and Nonnie
Kate (and McCanless)
Sissy, quite the chef, made four pans of chicken enchiladas for us! Yum!
The ride home was a bit more difficult than the ride down…
Mary Clare wanted desperately to sit in the very back of my Tahoe with all of the luggage and my sister, Kate. She was a bit angry with me. Can you tell?
McCanless sent me hate mail over the back of my seat with her magnetic board because I wouldn’t allow her to sit back there either.
She took one of my responses and embellished it.
After a few dozen, “I’m sorry” letters and “I love you’s” from me, she broke down…somewhat.
Finally. You are my sunshine too, McCanless!
Thank you Sissy! We all had the best time and love you (and Uncle Kurt) so very much! We can’t wait to see you again soon!
Easter Weekend 2010
On Saturday, we went to Virginia Ann’s Annual Easter Egg Hunt, which is always so much fun!
Two sleepy bunnies find their Easter baskets on Sunday morning!
The Easter bunny always leaves the girls lots of summer fun toys. Mary Clare immediately tried out all of her new loot. She jumped in the bath tub with her new swim suit, arm floaties, float ring and pool toys. I had to drag her out of the tub to dress her for church!
We were honored to have Mimi and BaPa at church with us this year. Unfortunately, we didn’t take the time to get a family photo!
St. Bartholomew’s Annual Easter Egg hunt
After lunch with my family and Mimi and Bapa and yet another egg hunt at the club, we headed out to Nonnie’s house for more Easter fun with the Woodham crew!
We’re back…
We arrived back in town last night around 9 pm and crashed! We spent most of our Spring Break down in Indiatlantic, Florida (visiting Sissy, Nonnie’s sister) with Nonnie, Kacy and Kate, a true girls road trip! (Uncle Kurt decided to spend the week traveling, and I can’t blame him! We had so much fun and I have lots of photos to post, as soon as I find longer than 5 minutes to sit down!
Mel flew to Tennessee yesterday as part of his next business venture…more details on that later. Always something going on around here! Today, the girls and I are off to PetsMart to gather necessary items for McCanless’ new pet turtle, “Easter Egg.” (She found him on Easter Sunday in our yard.) I think we’ll do a bit of shopping and maybe even head to Chuck E. Cheese. We are all suffering from the thick film of pollen lingering around here and are still waiting on those April showers to wash our allergies away. No such luck yet, but we are enjoying the 90 degree weather that SC spring brings. McCanless is getting more and more excited about Summer break and has lots of plans. Mary Clare has her heart catheterization scheduled for June 2 with surgery in the months following. We have so much going on and I am so thankful for our full and happy life!
Prestwood Easter Egg Hunt 2010
Who knew that an Easter Egg hunt, which began at 11:00, would be over by 11:05. This is the only photo I got. We arrived at 11:10.
We certainly had a full weekend, which warrants the tardy arrival in my book. We went to the movies (MC’s first, and she did fabulously!), out to eat, where the family beside our table moved, and spent an hour in PetsMart on Friday night with the entire Fort crew. We had two sleepovers, with one sick guest, who had to be taken home at 7 am, three birthday parties, one Easter Egg Hunt, about 3 hours of sleep, one visitation, sadly, and a doctor’s appointment. We now have four allergy sufferers, one sinus infection, one UTI (MC, again!), two antibiotics, and one 6 year old, who came home wearing a padded bra and large hoop earrings, who seriously needs an attidue adjustment. How was your weekend?
Oh, My Sweet Mary Clare…
Where are you? Maybe I have been oblivious to the baby girl who morphed into a toddler over night, but for some reason it smacked me in the face yesterday afternoon. Quite literally. Mary Clare is a full-blown 2 1/2 year old. Wow, do I remember saying to so many other “rookie” mothers, “Age three was WAY more difficult than age two for McCanless and me.” (As if I had turned into a pro after living through McCanless’ third year.) I don’t know if it is a girl thing or what, but they just gain so much independence and want to do everything “all by myself” and want their needs met immediately. I thought it was an “only” child/first born/strong willed thing with McCanless. Maybe it is just a three year old thing. Nevertheless, it is here. Once again. To say that Mary Clare is defiant right now would be a huge understatement. She wrinkles her face and nose, she grabs and shouts and throws, hits, bites, and scratches when things don’t go her way. Which happens to be quite often. Up until last night, it was a bit comical, cute even. I would laugh and pick her up proclaiming her my cute “little bossy one.” Now, I realize the damage that that caused. Yikes…
I guess I just better suck it up, put on my big girl panties and deal with her little “bossiness,” cute chubby cheeks and whispy, golden, flyaway locks and all. It is high-time she started wearing her own big girl panties! Wish me luck!
Grammar
Yesterday, McCanless said to Mary Clare, “I’m watching you with my eye.” (As she pointed from her baby sister to her own two eyes repeatedly.)
I said, “McCanless, how many eyes do you have?”
“Two, Mom.”
“Then you should be using the plural form of eye. What would that be?”
“Fine. Mary Clare, I’m watching you with my plural eyes.”
Thix Tooth Losth
McCanless lost her sixth tooth last night in her sleep!
Looks like she will be finding a pot of gold under her pillow this St. Patrick’s Day!
And once again, we’ll be writing a letter to Pixie Lily, her tooth fairy, explaining why there is no tooth left under the pillow. This is the third tooth she has swallowed in her sleep. Out of six! McCanless isn’t having great luck with keeping up with those lost teeth. One, she lost at school after insisting on taking it to show it off to her friends, and yet another Mary Clare held and lost in our yard. Sadly, Pixie Lily has only one little baby tooth on her necklace despite the missing 6 from McCanless’ mouth. At least she still rewards her with sparkling glitter and sparkling dollars on her pillow with our without the actual tooth!
At six-years-old with six teeth missing, it reminds me of when she was six-months-old with six teeth in! Wow, how time flies!
St. John, US Virgin Islands
Lucky us, Aunt Liz (Mel’s sister) decided to get married in the U.S. Virgin Islands! About 30 friends and family of Robert and Liz headed to the islands for a great time!
Snorkeling at Trunk Bay
McCanless snorkeled way out into deep waters with the adults!
“Rehearsal” Cocktail Cruise
After our catamaran docked, we headed into town to a local restaurant for the rehearsal dinner, a bit of dancing and toasts to the bride and groom.
Mel let it be known that he is a huge fan of steel drums, so the band decided to let him join them for a song or two…
Little did we all know that he can actually play the steel drums?!
McCanless took over my camera during the Catholic ceremony, which was a bit long in her book.
This is how Mary Clare spent the entire ceremony, sleeping on my sun burned chest.
Happy Wedding Day Liz and Robert! We love you very much!
Ahhhhh…
After a limo ride (funeral home travel, of course), two planes, one Westin bus, and a water taxi, we made it to St. John all in one piece!
We began our trip at 7 am yesterday and made it here by 9 pm! Whew, what a day, especially since we were on the plane, bus and water taxi with several many children, most of whom were cousins!
Reese and Mary Clare were simply giddy after the long day, playing hug, hug,hug…all fall down in the St. Thomas air port, apparently a game only the two of them know how to play. At least the kids all had each other to keep them happy!
The payoff: this is my view from the balcony waiting on everyone to wake as I update the world on our trip. It is 7 am and very warm already. (I can’t shake that school schedule.) My coffee and my newest Jodi Picoult book are beside me and I’m in “Ahhhh” mode. Soon the girlies and Mel will get up and we can hit the beach! Life is good!
Still in Charlotte!!
It is now 2:21 and we are still at CLT!! We boarded, watched a few episodes of iCarly and had to “evacuate” the plane! We are now waiting on another, hopefully safer plane…
Thank goodness we have plenty of cousins on board to help us occupy our time!
Sigh…
We’ve I’ve almost finished packing! As soon as I finish washing, folding, finding, sorting, ironing, coordinating, and strategically alligning our clothes, I’ll be done! (Mel is on his own and has yet to even think about what to pack.) I knew packing for three girls for a wedding in St. John would be difficult, but come on! Mel said he’s only “allowing” two suitcases. Total. AND although I do realize that I packed for the girls team last year for cousin Tim’s wedding in Mexico and, yes, we only took two suitcases then… total…
Mary Clare was a bit smaller. Not that we actually packed her in the suitcase. Just her clothes.
We just have stuff. Girls have stuff. And shoes. Mel should know this by now.
Besides I’d rather be charged for an additional loosely stuffed suitcase than pay for the additional charge of an overstuffed and overweight suitcase.
Enough procrastinating. Back to packing!
There’s no doubt about it…
my girls love to shake it!
Wow. Just wow…
Last week, Mel was at the Fire Department. (Now as Mayor, he is able to live out every boy’s childhood fantasy and be involved in the Fire Department!) Often, Mel stops by, usually late night, and visits with the fire fighters, and even has his own “pager.” He was talking to one of the volunteers about Mary Clare and explaining her heart, her surgeries and how her heart functions as a single ventricle. Much to his surprise, a young man walked up to him and knew exactly what he was explaining. If you have ever heard it explained, it is nothing the average person understands. I’ve even had to explain it to a few doctors and nurses myself. So how on earth this young many knew what HLHS is was C-R-A-Z-Y!
He knew because he is an HLHS survivor! Right here in Hartsville, Mel met a 30 year-old HLHS survivor. I still can’t believe it! This is what his precious mother posted to my blog today…. (I’m so excited, I just had to share!!)
Hi Kerri and Mel, before I even began reading your journal I felt such a connection with the two of you. I am the very proud Mom of an almost 30 year old son who was also born with HLHS. Mel, you met him about a week ago in Hartsville. He’s a paramedic working part-time in Hartsville. His name is Brandon Butler and he is the oldest survivor of this particular heart defect. He also goes to MUSC for his cardiology checkups. Just wanted you guys to know that there is a Mom out here who knows exactly what you are going through. The first seven years were awfully hard but God has been so good. Thankfully Brandon has had only minor problems in the past 22 years. His Fontan was done at the Mayo Clinic in Minnesota in 1986 and we spent approximately 6 weeks there. His surgery went great…no problems at all. I’m sure that Mary Clare will be just fine. She is such a precious little girl. Kerri,I would love for you to meet Brandon and see “my miracle”. One thing these children have is the drive to pack everything into life that they can. Brandon never stops! He’s a full-time paramedic with Marlboro County Rescue, part-time with Darco and Scotland County and also helps a friend of his in Horry County with his transport service. I’d like for him to rest some but that’s totally out of the question! … If you ever have an questions or just need to talk please feel free to contact me….My thoughts and prayers are with you all.
If anyone else reading this blog needs someone to talk to or just to see that there is a light at the end of this long tunnel, please don’t hesitate to call.
Jackie Butler Nolan
She even gave me her phone number! Guess who I’m calling tonight?
Wow.
“The THA must-attend, event of the month” according to McCanless…
Want to know why the girls insisted on wearing rollers to bed last Friday night?
(Well, actually McCanless begged to wear them, and, well, you know how little sister is…Monkey see, Monkey do.)
…so they could get FANCY on Saturday morning …and curly hair was only the beginning! We pulled out our Fancy Nancy ensembles, hot pink feather boas, glitter make-up, heels, tiaras and sparkle pocket books! (Even Mommy wore pink and purple to the splendiferous affair!) As Nancy says, “More is always better!” I think my girls live by this mantra.
She may be snaggle, but she certainly has stupendous style!
We almost didn’t recognize Fancy Ms. Susie, McCanless’ teacher!
Pink and purple explosion…balloons, glitter crafts, princess face paint a real disco ball and and jewelry…all followed by a perfectly perfect tea party!
Mary Clare waiting for her nails to dry!
Ms. Susie read Fancy Nancy books, too! It was a most wonderful affair!
Jack-O-Cannie!
McCanless lost her fourth tooth last Monday afternoon and another on Tuesday, while we were at MUSC with Mary Clare! (Just in time for Aunt Liz’s wedding and lots of family wedding photos!)
Just a taste of the drama going on in our household…
I’m in the kitchen loading the dishwasher with the Wizards of Waverly Place theme song stuck in my head (for some reason), feathers stuck to my shirt and glitter under my nails from the Fancy Nancy Party I took the girls to this morning….)
McCanless comes running in with black booty shorts, blue glitter chucks and her Justice glitter pink hoodie on….(also with left over mascara under her eyes and glitter and face paint all from the Fancy Nancy Party)
McCanless: MOM, we have a major problem. It’s devastating! (I swear, I’m not exaggerating.)
Me: And what is the problem, McCanless?
McCanless: Hannah Montana’s new movie will be on the Disney channel on March 9!
Me: And that is devastating?
McCanless: MOM, WE LEAVE FOR LIZ’S WEDDING ON MARCH 9! UGGGGGGH! (Big dramatic gestures going on here…)
Me: Sweetheart, our plane doesn’t fly out until March 10.
McCanless: (Screams so loud it wakes up MC in my bedroom) OH, what a relief, Mom. I was really worried there for a minute. Whew! (Big deep breaths.)
I’m not kidding.
MUSC Cardiology Apt..
Yesterday was a simply stunning day in Charleston! It was sunny and 65 degrees. Just beautiful. Mel and I took off with both girls pretty early for a long day at our favorite hospital. I wanted to have Mary Clare checked by her cardiologist, Dr. Forbus, before we flew to St. John in a couple of weeks; just as I did last year before we flew to Mexico and the previous year before we flew to Chicago…She is becoming quite the world traveler, my Mary Clare.
As we walked through the halls of MUSC, McCanless stopped me and asked me to pull her loose tooth. (It has been hanging by a thread for days now. I knew she would end up swallowing it as she has done twice before.) I kneeled down and popped it right out! More memories at MUSC!
It was time for blood work and that certainly wasn’t fun for Miss Mary Clare (or Mommy, who had to hold her down), but she proved to be a big girl and only cried for a moment. The dozen or so “DU-DU Dora” stickers that Ms. Francis gave her helped tremendously, however! Her oxygen saturation levels were in the low 90’s, which is an all time high for her! (Her norm is usually mid 80’s.) Her blood pressure was great, her heart size was great and overall health was great! She is still hovering around 26-27 pounds, so her heart catheterization was scheduled for June, in hopes that she’ll chunk up at least a bit by then. Her cardiologist just said she is just a petite and short little girl, and will probably always be so. So, they decided to proceed.
Once Mary Clare has her heart catheteriztion in June, we’ll know exact levels and pressures in her heart. If everything looks okay, we can schedule her surgery within the next 6 months. (Unless levels/pressures dictate a sooner surgery date.) The catheterization will only be an overnight stay but Dr. Forbus told us to expect a 6 week stay for the Fontan, her third staged surgery. We have so much to consider and so much to prepare for when that time comes. It’s ironic, though, after waiting over three years, we are finally at the end of this stage of our journey. I found out about Mary Clare’s fragile heart in February of 2007. We knew it was a three-staged surgery procedure, and the Fontan seemed so far away. Here we are in February of 2010 and we are preparing for her third and final surgery.
Others who have asked get a glazed look on their faces or hold their breaths when we talk about her surgery, but we have already accepted her path and are ready for it. It is a necessity, yet a miracle that we are so fortunate enough to be able to witness.
As the sun set over the harbor, we headed to my favorite spot, Fleet Landing, for an early dinner and then to Market street for everyone’s favorite, River Street Sweets, for pralines and rock candy!
2010 THA Valentine’s Dance
THA held another school-wide Valentine’s Dance on Thursday, Feb 11 during school. It is such a neat event and I love seeing all ages dancing together! 3K-8th graders and faculty all gather in the gym and dance and have the best time!
My big six-year-old!
A little bit softer now…
Put your hands up…
Daddy stopped by for a father/daughter dance with McCanless.
The girls in 5K thought they would teach Ms. Susie a few moves!
Not Funny…
Daddy! Especially since we both know that we purchased a LiveStrong treadmill just last weekend to get rid of those extra LB’s. (Further proof that we are not planning on another addition-baby or room, for that matter.) My mother, who is as easy to belive something like this story as she is to play a joke on, still thinks that I’m pregnant, I’m certain. (This is no joke, mom.) Furthermore, it doesn’t help that I asked her to pick-up McCanless from school today because I have an appointment with my doctor. My OB/GYN, nonetheless. So again, I’ll state: I’m NOT pregnant or forsee us having another baby EVER.
I wish I could somehow block Mel from posting on MY blog or altering/adding to my entries. (Remember? You have your own, sweetie.) However, he is the creator, designer, technical HTML writer person and he is the father of my TWO precious girls, and does take part in their lives, so I guess I’m outnumbered on this one. So thanks for your two cents, Mel.
Now, moving right along…
For the record… Updated by Daddy.
**This version has been updated by daddy. It is possible that mommy won’t read this for a few more hours so enjoy.
I know my sweet McCanless has a vivid imagination, not solely noticed by her mother, either. It was no surprise to me that her teacher noted her love of storytelling, and creative and mature writing ability on her report card for first semester. I have also discovered along the way she has a knack for embellishing the truth, so to speak. “She gets this honestly” –Daddy
Her first “horrid” blue frog in school (and only I may add) was due to a little white lie to her teacher. It was full of details and “embellishments” which only dug her hole deeper and deeper and turned her little white lie into a big old fat lie, to which Mel later replied, “what kid doesn’t lie to their teacher?” GASP! Needless to say, I handled the life lesson and character education with this one! A lesson only learned by experience, though. Lesson learned. Or so I thought.
Today, I received a few emails and one phone call wishing me congratulations and for the record…
I am not pregnant.
“Not yet.” –Daddy
I am not planning, thinking about, contemplating, dreaming about or hope to be pregnant or become pregnant in the near or distant future.
“Daddy just has to produce another bedroom and bathroom according to mommy to qualify for having another baby. 1 baby = $50,000 addition? ” –Daddy
Apparently, McCanless’ hope for a new baby sister has extended far beyond our household. For a while now, she has been begging me to have her a baby sister and I thought that is where it ended. Today, however, I discovered that she has told each of her teachers at school that I am expecting. Her classroom teacher, Ms. Susie, heard all of the details of our plans for adding Marcy, her baby sister, to our family, right down to where little Marcy will sleep.
“Daddy had nothing to do with this. Honestly.” –Daddy
Ms. Crouch, the librarian even sent me an email to congratulate me on our great news. I have since received a phone call and two emails from other parents in our school about our newest addition. I figure, McCanless has about 25 friends in both 5K classes, so that means It will only take about 2 hours for word to spread around town to Mel. I thought I’d tackle it here first and wait for Mel to approach me about it later.
“I’m clueless, trust me.” –Daddy
We’ll see how he handles her little white lie this time.
“White lie? Possibly… A little coaching from daddy? Most definitely. I’ll keep you updated on our progress. Until then I’m taking donations for that addition.” –Daddy
The Blizzard of 2010
Friday around lunch time, I had the car all packed and ready to hit the road to the beach for a weekend out of town. The girls were bundled up and we were on our way…then a Southern blizzard hit Hartsville. With such “severe” conditions, we decided to stay home and enjoy the snow here, at home!
…and we are so glad we did!
Mary Clare, however, is like her mother and was not a huge fan of the snow.
Daddy just couldn’t help himself…He loves throwing snowballs!
We don’t really have proper snow gear, but it was fun to see our family of winter boots drying out by the fire at the end of the night.
…and what a view we had the next morning!!
Emmie loved running in the snow, and even fell into the lake!
Daddy was at it again!
After Daddy knocked her down a few dozen times, she was ready to go back inside!
So we made snow cream!! Yum!
Not bad for a weekend stuck at home, huh?
Although the snow was beautiful and temporary we are ready for flip flops and swim suits. (Good thing our trip to St. John is less than a month away!)
I didn’t post picutres of my sweet Mary Clare in the hospital after her first open heart surgery. I was just too afraid to share that with the world on her blog. I barely took any photos, for that matter. I didn’t even post. Mel wrote all of the updates at MUSC for a while. I was focusing only on her and I really couldn’t tell you why I didn’t want to post or take photos. It was hard enough to remember to breathe.
I did post one sweet photo of her on the day before her surgery so that many of our friends and family could see her for the first time. I didn’t realize at the time that it would be the only photo of her precious body without the battle scars of multiple open heart surgeries. A few months later when I printed all of her MUSC photos and I was putting together a book/journal of her heart journey, I sat on the floor in front of my album, holding her and that one photo of her without her scar. Only one single photo shows her perfect and precious body. I cried and cried, knowing that she was marked forever. A scarlet letter adorning her chest. A constant reminder of her broken heart and this very difficult journey of life for her.
Then, I didn’t realize how much that one little scar would change all of us. It certainly is a constant reminder of many things. Now, however, I choose to see the beauty in that scar, for without it, I wouldn’t have my sweet, sweet miracle. It reminds me of all that is precious in our lives. It reminds me to thank God for every moment.
July 1, 2007
Mary Clare without her precious scar.
CHD Awareness Week 2010
I always try to get a cute shot of my blueberry for her annual CHD Awareness Day Photo proudly displaying her battle scars.
Sounds easy, and it would be if
my little blueberry would only pause
even for a moment.
But then again,
this only reminds me of how blessed we are
to have such a spunky fighter.
Oh, how we adore that spirit and that scar!
Preaching to the choir
Church is always a joyous event for us. An Episcopal service with weekly communion can get pretty long for children, but I really don’t worry about the girls. Our church family knows my girls and Mel, for that matter, and understands us. (Or so I hope.) Sometimes, we get the giggles, usually, because of Mary Clare. Today, however, McCanless and I didn’t have Mary Clare to blame. It was early in the service and she was still in the nursery. McCanless decided to stay with me instead of going to children’s chapel; so it was just the two of us there in our usual pew, right in front, right under Father Michael. We were reading the program and I was having her follow along with the words as I pointed to each one. We sang, “Holy, Holy, Holy Lord, God of power and might…” McCanless began to belt out giggles. Loud, contagious giggles. She couldn’t help herself. It truly was one of those non-stop, involuntary laughs. As I whispered and questioned her, she said, “I know it isn’t right, but we just said that Jesus has holes.”
I just couldn’t help myself as I, too, began to laugh and I just so happened to notice a few choir members laughing along with us.
Saturday Randomness…
Friday afternoon, I met my sister in Camden for the swap. The girls went with Kacy and William to the circus and spent the night in Columbia, so Mel and I were able to have date night again this weekend! We went to the usual, Bow Thai, on Friday evening and enjoyed going to the Market downtown Saturday morning kid-free.
As Mel was stopped by every other person to chat business, city or politics, I left him so I could enjoy the soup cook-off. I also bought my usual stock of cheeses from Ovis Hill Farms. Mel headed to work and I headed to get the girls.
After lunch, I took McCanless and Mary Clare to a Coker basketball game, where Dizzy Petites made their Hartsville Hip Hop debut at half-time of the girls game.
The girl loves to perform.
This girl loves to change clothes. (…and costumes, and bathing suits, and her sister’s clothes, and pajamas and panties at least 10 times a day. At least.)
Later that afternoon, the girls wanted a snack, so we stuffed a few noodles through hot dogs…
See?
Well,
we stuffed them before we cooked them. Obviously. A neat little trick I read about in a Family Fun magazine.
Mary Clare decided it was her turn to have a performance with a live audience. She placed us, along with a few of her dolls, on the floor of my bedroom to watch her dance.
Her new signature move.
After another quick costume change…
…to match her princess doll, she was ready to move on and play mommy.
…and McCanless cried again when she remembered how much longer she has until she can change her earrings. Which reminds me about her Groundhog Day experience…
She surprisingly jumped out of bed on Groundhog Day eager to watch the news, somthing she has never done. When she realized that none of the news channels would let her know the status of the official groundhog, so early I asked her why she was so concerned. She simply had to know if he would see his shadow, even before dawn. I told her Ms. Susie would let her know as soon as possible. As we drove to school, I had to explain that even if he left his home and Spring would supposedly come sooner, it could still be a while. It was all in fun, I explained. She immediately burst into sobs and screams. “I thought Spring would be today! Then I could change my earrings. I hate that Groundhog.” Apparently, I told her that she would be able to change her earrings when the weather began to warm up. And apparently if the Groundhog brought us a sooner Spring, it would begin that day, or so she thought.
Saturday night, Mel came running into the door from work at 7pm to jump in the shower for the Women’s League of Hartsville’s annual auction, in which he was the host and auctioneer. (It started at 7) I don’t worry about it any more. I just put on my cocktail dress and wait. I’ve learned. This year was his 6th. Nonnie came over to keep the girls and brought these fabulous pink and purple M&M’s with the girls’ faces on them! What a Valentine’s treat! We watched Cheetah Girls and ate popcorn and M&M’s with Nonnie until Daddy was ready to run back out of the door. We had a fun night and Mel, as usual, was great.
Dreaming of warm sunsets…
just like those we enjoyed merely two days ago.
Today, during the “severe” weather watch that only the South shuts down for, we are watching the rain fall, wind blow and ice form on the tips of the branches of Cypress trees. No ice on the roads just yet, but we have hunkered down for the weekend. Mel and I ventured out to dinner at Bow Thai and then to Wal-Mart last night to prepare for the severe weather while our girls enjoyed movie night at First Baptist Church. We stocked up on Moon Sand, movies and munchies. (Along with the rest of Hartsville, who inevitably stocks up on bread and milk at even the remote possibility of ice.)
Daddy left for work early, so today, so far, the girls’ team has enjoyed a late and large breakfast, created a Moon Sand castle, roller skated around the house at least 300 times, made chocolate frozen banana pops, ate popcorn for lunch, have had two dance parties and have watched at least a dozen iCarly episodes. (Is iCarly always on Nick?) It isn’t often that we are home for more than a two hour stretch, so I’ve still got some planning to do, as it is only 2pm. Maybe a nap is in store for us.
Hopefully after our severe weather weekend, we’ll enjoy more 60-70ish weather once again! Until then…
She did it!
Saturday afternoon, as Mary Clare, McCanless and I were hand-in-hand skipping out of Magnolia Mall, it hit me. I realized that I had just experienced a major rite of passage with my oldest daughter. McCanless did it. She got her ears pierced. I was in tears as I looked down at my big six- year- old smiling like a Cheshire cat. I had no idea I would be so emotional. I didn’t feel quite so weird when we later called my sister and she also cried upon hearing the news…
It was a beautiful sunny day and the girls team decided to put those Christmas gift cards to good use and go shopping. A few shops later, we were in line at Target and McCanless looked at me with a sly grin. “Mom, I want to go get my ears pierced.”
I nearly fainted. She has wanted real earrings for a while now, even going so far as to wear magnetic and stick-on earrings daily, but wouldn’t dare put herself through the pain of the real deal. I told her after her sixth birthday she could do it. But still, she refused and said she would never, ever, ever really have her ears pierced, so it came as a huge surprise that she seemed ready.
We immediately took off for Claire’s boutique in the mall. I didn’t have my camera, Mary Clare was in dire need of a nap and we only had 20 minutes until I had to be home for a party with Daddy. I knew we would have lots of consideration and contemplation to do. This is McCanless we’re talking about. Lots to do in little time. I was skeptical. We walked in as another little girl was in the piercing chair. Great. As soon as the little girl began to scream I knew we would be leaving soon. No ears pierced. I told McCanless we could go home. No big deal. (Actually, after seeing the little girl scream, I didn’t really want McCanless to have it done. My heart ached as I knew she would soon feel the same pain. ) I encouraged her to wait a while. Maybe even bring Daddy with us next time. Later. Maybe in a month. Or two. This summer, even.
I think it was the allure of the shiny, sparkly earrings all around her, but she was more determined than ever. She chose “diamonds” and it was over in a matter of minutes. My baby girl cried for a moment and a diamond-studded big girl emerged from the hot pink vinyl chair eager to see herself in the mirror.
Immediately, Mary Clare threw herself in a rage onto the floor screaming to have her ears pierced, too.
McCanless perused the big hoop section and chose a multi pack of pink, purple and turquoise hoops. I had to. I couldn’t tell her that after going through all of that, that mom and dad had a few rules about types of earrings. We’ll get to that later.
So my big girl has her ears pierced. I have no photos of the monumental event, but I will never, ever forget the smile on her face, bursting with excitement, as she looked in the mirror for the first time to see her beautiful “diamond” earrings.
Just another Friday…
Last night, as we were going through our usual bedtime routine, Mary Clare decided to spice things up a bit. McCanless was already in her bed asleep at 8 pm. (She has strep throat, by the way, which is the only reason she would be in the bed asleep at such an hour.) I plopped Mary Clare up onto the counter as I do every night. She had her juice in one hand and her paci in the other. I turned my back to grab her syringe for her Blood Pressure medication, which happened to be sitting beside her. We have done this twice a day for her entire life. She takes 2 ml’s of her Enalapril. Once in the morning and once at night. In the split second that I was grabbing the syringe, I heard her sucking on her sippy cup, or so I thought. I turned around and she had the bottle of Enalapril turned up.
Funny, I didn’t panic. I’m not sure if it is just my personality or that I’m so used to unexpected events in my household after having three high maintenance people living with me. It also helped that I remembered one of my heart mom friends, Maddie‘s mom, from Washington State, telling me about her daughter who had an over-dosage of her BP med for a couple of weeks. (Pharmacy’s fault, but she was fine, thank goodness.) So that gave me some comfort, I’m sure.
Nonetheless, I grabbed the phone to call Mel, who was at a city function. I couldn’t get him so I called MUSC….and long story short, we ended up going to our local hospital to be monitored for four hours. (Well, I wasn’t monitored. Mary Clare was monitored.) All was fine. Her BP did drop pretty low, but not low enough for intervention. The nurses were more concerned about her “low” oxygen levels because they were in the upper 70’s. I had to explain numerous times that her O2 wasn’t our concern. This was about her BP. Upper 70’s are fine for her, especially when she was sleeping! Such is life with a heart kiddo.
So today, we’re home. Vegging right now. McCanless is ill because I won’t allow her to skate through the house (sick, remember?) and I took Mary Clare to school for a couple of hours to get out of the house. She certainly hasn’t been acting like her BP is running low. Quite the contrary. She was running circles around McCanless this morning and begged me to take her to the park at 8 AM despite our late night rendezvous. So, pre-school it was!
Life is back to normal. McCanless is fussing. Mary Clare is happily blue. Mel is filming some local television interview and I’m tired and thankful. And happy.
Lesson learned.
My sweetheart in her princess pj’s fast asleep at the hospital. Even the constant BP cuff squeezes and the beeping of the pulse oximeter going berserk over her “low” levels didn’t arouse sleeping beauty.
From the moment she met her baby sister,
McCanless has amazed me with her constant understanding
and love for Mary Clare.
She has been a loving,
fun,
patient,
and trusting big sister.
Mary Clare thinks McCanless hung the moon,
and simply adores her.
I am so thankful they have each other,
and that I have them.
6th Birthday Skate Party 2010
Glow bracelets, disco ball necklaces, a little duck shooting, and lots of roller derby pals made for an awesome 6th birthday party for McCanless!
I may have to pass the torch. My little rising party planner told me exactly what she wanted and even designed her cake. I took her to CJ’s and she told the cake designer every detail, down to the disco ball on top!
It was a family affair. Mel made a Roller Derby Mix CD for everyone as party favors. (Some didn’t burn correctly for CD players, like mine, so if you need another, please call me! It is a great mix.)
Roller Derby Princess
Mommy, McCanless and Daddy
Michael, Reese and Michael
Kaitlin, Zara and McCanless
Ashleigh and Connor
Bapa and Mimi
Lots-a skate mammas!
…and Daddys
..and one skate baby!
William and Mary Clare
Aunt Liz and Rosie
Baby brother, Alston…Derby King
Happy Birthday, my sweet six year old.
January 5, 2010
So how did my now six-year-old spend her birthday this year? January 5, 2010 was the first day back to school after Christmas break, so she couldn’t wait to share the good news of her birthday with her classmates. She jumped out of bed that morning eager to begin her birthday. With 30 white-frosted, pink-sprinkled cupcakes in tow, her day began as she was dubbed the classroom princess, so she says. She was morning board leader, line leader and even received flowers from Nonnie at school.
After dance class that afternoon, we did what we always do on birthdays.
We headed to Los Tres for a birthday dinner, Mexican style! (I will have to say that she is her father’s daughter. I offered the choice of Chuck E. Cheese with the four of us (Mommy, Daddy, MC and McCanless) or Mexican with anyone else who could make it on a last minute notice.) She loves celebrating with a crowd. So, Los Tres it was!
Mary Clare, donning one of McCanless’ gifts, a party dress, spent the evening bargaining with grandparents for quarters for the tatoo and gumball machines.
McCanless loves new clothes!
Happy Birthday-Day, McCanless!
Like a ton of bricks…
So, it hit me today as I was watching a Jif peanut butter commercial. (Which is ironic in itself; I never watch television. I just happened to turn on the television in the kitchen as I was eating a bowl of cereal for lunch.) A teenager in college received a care package from her mother. She was calling to thank her for the comfort food and love from home. The mom answered the phone and said, “Hi college girl.” That’s when it hit me. In ten years, McCanless will probably have narrowed down her college choices. At 16, I was entering my junior year of high school, I thought I knew everything and was on a one way track to USC. I thought of the experiences I lived through, thank goodness, and thought of all that I had in front of me at that point in life, with so much to learn. McCanless will be there in 10 years. 10 years is not a long time AT ALL. I was in tears again as I thought, “Then Mary Clare is only three years behind her.”
Am I crazy?
Okay, so I know she is only six, but still I’m a mom. I want my babies with me forever. My tune may change as my “babies” grow into teenagers. For now, though, I wish I could freeze time and keep them with me always. I love the midnight sounds down the hallway when I realize that I’ll soon have an additional snuggle partner. (I find it fun to guess who it actually is. A thud and hard, slow steps and a pillow dragging behind mean McCanless is on her way. Quiet and quick pitter-patter foreshadows my youngest baby girl who will inevitably ask for juice as soon as she climbs into bed.) I love taking McCanless to school with me and love that she is proud to walk down the hallway hand-in-hand with her mother for now. And if only Mary Clare’s complete trust in me and belief that I, as her mother, can fix anything would last forever. I know so much of this will change, but I’ve got my fingers crossed. (We can always buy a king sized bed as they grow taller, right?)
I’ve found that I love each phase of our lives more and more as the years pass. I can’t imagine having more love and more fun with my little family than I do right now, so I can’t to see what is in store for us! Hopefully, I won’t have to face anymore peanut butter commercials any time soon.
Happy Birthday, My Sweet McCanless
1 month old
1 year old
2 years old
3 years old
4 years old
5 years old
Almost Six
Little Sister…
…is really into two things right now.
Bathing suits
and anything big sister is really into…
Pink Barbie Make-up, for example.
01.01.10 almost…
Mel, Mary Clare and I enjoyed a not-so-quiet* dinner out tonight and are now tucked into pj’s with full bellies watching the fire in the fireplace waiting on the ball to drop. My kind of New Year’s Celebration. We passed up a couple of invitations to ring in twenty-ten with friends, but opted for a quiet, lazy evening with family. McCanless would have been a part of our small celebration, but being my little social one, decided to go with the Forts to her idea of heaven on earth, The Great Wolf Lodge in Concord, NC. (An overnight lodge/indoor water park) *Mary Clare has decided that singing at the top of her lungs any and everywhere is her thing.
2009 proved to be more exciting, crazier and full of more laughs than any year so far for us. We are loving our life and can’t wait to see what 2010 holds!
Happy New Year, Friends!
The youngest Pennington Princess…
Being two can be so tough sometimes…
Testing Tutu Twirl-ability…
By the way, Aunt Liz is getting married on St. John’s island in March!! (Which is the reason for Mary Clare’s new bathing suit!)
Christmas Day 2009
What a fun Christmas we had this year! McCanless and Mary Clare had their wish lists prepared and mailed off early and Santa did not disappoint! McCanless was so excited this year and even improved her calendar skills as she learned to read our calendar while crossing off every day in December until the “Big Day!” On Christmas Eve, she awoke, ran around the house twice, and marched into the kitchen with a puzzled look on her face. She slung open the pantry door (where I keep my calendar) and proclaimed, “HE FORGOT TO COME!” I had to explain that although we have been counting down to Christmas Eve, Santa doesn’t come until that night, and presents wouldn’t show up until the morning of Christmas day. She stopped and half-giggled and told me that only for a minute was she worried that she may have been placed on the naughty list. “Only for minute,” was she worried.
Along with calendar skills, I think we learned a bit about patience.
Santa worked hard on McCanless’ one-of-a-kind, pink, polka-dot television! (A very specifically detailed item on her Christmas list!)
Mary Clare went straight for the pink, princess toddler skates! She has worn them every day since Christmas!
Mary Clare was so excited and had to try out every single gift as she opened it. She would open a gift and play with it until I urged her to open another.
…costumes, costumes, shoes, costumes, costumes, more shoes….
No, McCanless didn’t have an elf pierce her ears! Santa left her the most beautiful and “kinda real, but not really” magnetic earrings! (Another very specific request!)
…pink polka dots, pink pj’s, pink Barbies, pink crowns, pink outfits, pink make-up, pink earrings, pink jewelry…
Santa can’t take credit for Mel’s big surprise. Papa and BB gave Mel this Sony TV on Christmas Eve, but he couldn’t stand it. He had to break it out and set it up on Christmas morning with all of the excitement going on!
We headed over to Nonnie’s house for lunch.
Mary Clare was peeking into her box of Bitty Baby twins that Nonnie and Bubba gave her.
We spent a very relaxing day eating and napping all afternoon!
Merry Christmas 2009!
Christmas Eve 2009
5:00 Service at St. Bartholomew’s was just as beautiful as ever!
The girls wanted to pose with Baby Jesus, and who am I to stop them?
Then on to BB and PaPa’s house for dinner!
…and lots of fun!
After dinner and gifts, we hit the road to see all of Hartsville’s finest Christmas Lights! (The entire Pennington crew in the funeral home limo, of course, listening to Disney’s Classic Christmas tunes, aka, The Orange Disney Tape!)
Once we were home, the girls, very carefully, spread their reindeer food on the front lawn. (In one big nice clump right at the front door steps!)
…finally the girls were nestled, all snug in their beds!
The Countdown to Christmas…
Along with the many parades, parties and programs this month…
…on the days before Christmas, we partied at Church while wrapping gifts for needy families….
…and crafted lots of new and sparkly ornaments….
…and had birthday cake for Jesus!
We had a gingerbread-decorating, costume-changing, microphone-singing, wild and crazy playdate with the Fort girls.
We decorated sugar cookies at the Evans’s house on Christmas Eve!
Merry Christmas!
We hope your Christmas is as sweet as ours!
A very special day!
Last Sunday, December 20, 2009, Mary Clare participated in the Holy Eucharist! She has been asking for several months if she can take “munion” with us. We spoke to Father Michael about it and remembered that McCanless also had her first communion at 2 1/2, on Father’s Day in 2006. He is a firm believer in allowing children to participate, especially when they show an interest, and allowing them, as baptized Christians, the right to this very important Holy Sacrament. She kneeled, held her little hands out (barely over the chancel rail) to take the wafer, and did exactly as she was told. She was still chewing when the Chalice came around, so we passed on the wine. I think I’ll continue to allow her to pass on that for a while.
I was so proud and it was such a beautiful moment. What a miracle the Holy Communion is and what a miracle that Mary Clare is alive and well and able to celebrate Christ in this way.
I didn’t get photos before, during or after church, but we were there for a Christmas party that evening, so I snapped a couple of quick photos of the girls in our beautiful church after the party!
Mel had a trunk clothing show for Pennington & Bailes at Brittons in Columbia today and he took the girls with him! Although it was a fabulously quiet day for me and I was able to get lots of much needed Christmas shopping and wrapping done, this is how he brought Mary Clare back home to me….
McCanless blames the turquoise marker in the car. Mel blames my sister, Kacy, who played with them all afternoon. Mary Clare said that Daddy made her do it. I still haven’t gotten the whole story. All I know is that it took a lot of soap and a lot of scrubbing to make sure she didn’t have a blueberry face for church tomorrow morning!
Dizzy Dancin’ Winter Show-Offs!
These are photos I took before Winter Show-Offs…I forgot my camera! Mary Clare enjoyed movie night at her pre-school; so I was really able to enjoy watching the dancers instead of chasing Miss Priss around the entire time! I watched McCanless dance in her hip hop routine, Petite Jazz number and the Company Production routine! I was so proud. She did such a great job!
Ms. Sheila snapped this photo of my little dancer and me before the show!
A Baby Pennington dot com secret for your eyes only!
Mel asked me to let you in on a little secret, seeing that you all are such loyal fans of our two babypenningtons and all. If you go to www.stadiumpants.com and make a purchase, enter HALF in the coupon code box during checkout and guess what you”ll get? Half off any Pennington & Bailes merchandise! Merry Christmas from Mel.
Just a few new tidbits…
Christmas news…McCanless and Mary Clare’s Christmas elf, Elfy, now wears a beautiful snowflake skirt especially made for elves! (Thanks so much Aunt Liz!) I just knew McCanless would love the new accessory and be thrilled to learn that her elf is a girl. As soon as she saw it, very dryly said, “Mom. Elfy has on a skirt. I guess he is a Tom Girl.”
Sorry for the delay in our annual family Christmas card. Let me explain….Mel, being the new Hartsville Mayor, decided that he needed to add “a few” people to my address list. I knew what “a few” could mean, so I decided to hand over the reins and let him take over. (He actually has worked on it a bit…You saw his first unapproved draft in a recent post.) If you know Mel at all, you know that his brain doesn’t think in numbers at all. Time, money and numbers, like “a few” are terminology in an abstract science for Mel. Bapa calls it “Mel Math.” I’m afraid that McCanless has inherited his right-brain”ness,” and inherent math skills. So, we’ll see when and if our cards get out. We may be sending New Year’s Cards!
We have been super busy with church, shopping, gingerbread decorating and everything Christmas! Mary Clare has enjoyed rearranging our Christmas tree each and every day and is super excited about her visit from Santa. She wants pink presents and anything she can think of at that moment. She’ll often see a gift in a store and look up at me and say, “Mom, Santa will bring me that? Okay?” More like a statement-question. McCanless has asked for a pink television with turquoise polka dots, sick on earrings that “look like real earrings,” make-up, sequin tank-tops and many, many Barbie’s and accessories. (I have no idea where she gets this from! Honestly.) We have written our letters to Santa, but we still need to take them to the Santa Express Mail box down town.
Potty News…Mel decided, after persuasion from his youngest, chubby-cheeked daughter, that it would be a great idea for her to wear her brand new, pink, flower panties to school. Without a training diaper! It probably would have been a good idea to let someone else know, but Miss MC has let us in on a little secret of hers. She CAN do it. When I picked her up at 12, the teachers let me know that they realized she was without a diaper around 10:30 or so, and mentioned that it just may be a good idea for Mel to let them know next time. (Although he forgot to let them know once again yesterday.) But she did it! She is turning into McCanless more and more every day! When she wears her panties, she knows not to go! My little stinker.
Hope you all are having just as much fun as we are this season!
What happens when Daddy is in charge of the family Christmas card…
Which is why Daddy has been relieved of his duties for planning the family Christmas card this year…
and every other year from now on.
Is this not the cutest…
little Mexican Snowman you have ever seen?
It may be the only little Mexican Snowman you have ever seen, too! McCanless’ 5K class represented Mexico in the THA Christmas musical and sang “Frosty, the Snowman” in Spanish.
The theme of the musical was “Around the World at Christmas Time” and it really got me into the Christmas Spirit. Especially when the entire student body encircled the audience and sang “We are the World” hand in hand.
2009 Hartsville Christmas Parade and Tree Lighting
As co-chairman of the Hartsville Christmas parade, Mel had to get up super early to get ready for the big day.
Once we loaded McCanless up onto the Dizzy Dancin’ float, we hit the road as Mel (as Mayor) was Grand Marshal of the Parade.
Mel and Mary Clare leading the pack of floats, bands, horses, and Christmas hoopla. It was so much fun!
Once we were nearing the end of the parade route, Mary Clare and I detoured off course to stand and watch the parade, specifically waiting for our dancing McCanless!
Reese and Mary Clare
There she is, dancing her little heart out!
Michael, Grandmother, Nonnie, McCanless, MC, Me, Michael and Reese
Michael, Michael and Reese
Almost everybody…
Grandmother, PaPa, Mary Clare, me, McCanless, Mel, Michael, Michael, Reese, Kathryn, and BB
It has become somewhat of a family tradition to eat lunch at Ruth’s after the Christmas parade, so that’s exactly what we did!
Two Mel’s Specials in more ways than one!
Mommy and Baby MC!
That same evening was the Hartsville Christmas tree lighting with Polar Express in Burry Park. (Yup, another one of Mel’s events.) Everyone bundled up, brought lawn chairs and blankets and snuggled together in the park.
It was great, but, unfortunately, was one of the coldest nights we have had in South Carolina in a very long time!
That didn’t seem to bother Mary Clare much at all despite her blue lips and purple hands!
McCanless sat entranced at the Polar Express. It was truly magical on such a huge screen with the music echoing throughout the park.
“Mary Clare, what do you think about everyone fussing over this cold weather?”
Bapa and McCanless looking at the Christmas tree
Kacy and Mary Clare
Merry Christmas 2009
A perfect end to a perfect day. Bapa read his favorite Christmas book to the girls, The Christmas Cookie Sprinkle Snitcher.
Two Christmas Hams…
Ham 1
Ham 2
Ham 1
Ham 2
Ham 1
Ham 2
You get the picture.
Whatever McCanless is doing, Miss MC must do, no matter what.
Surprise
A few decorations, pizza and crowns, of course, make for a superb 34th Birthday Party! Don’t you agree?
Status of potty training, you ask?
What potty training? Mary Clare is far more interested in finding the appropriate potty accessories than actually going potty.
So, no one mentioned to me that what works for one of your children may not quite work as well with another, despite the fact that they derived from the same gene pool. McCanless was a breeze. I bought princess panties and that was that. She was trained before she was two. No trouble. No whoops. No fuss. I didn’t even try with her, and I have just assumed that the same “technique” would work for Miss Mary Clare.
I was wrong.
I think I may have to actually work on a plan of attack because, clearly, she has no desire to ever use the potty for what it is intended. Any suggestions before I begin Potty Boot Camp?
We’ll not even mention the paci. Okay?
Happy 34th Birthday Daddy!
Happy Birthday to you!
Happy Birthday to you!
Happy Birthday to Daddy!
Happy Birthday to You!
P.S. We have another very important birthday approaching!!
McCanless will be S-I-X on January 5, 2010!
Save the date! We’ll celebrate and skate!!
Party on 01.10.10 4-5:30
We’re Ready!!
We broke out the mugs and marshmallows last night to officially kick-off the Christmas season!
My little sweetheart loved her very first taste of hot chocolate. Big surprise.
We decorated mommy’s One Eared Cow tree…
…and the big tree with Daufuskie ornaments, Baby’s First Christmas Ornaments from 1975, 1977, 2004 and 2007, and Annabelle’s Bow…
…and reminisced about Halloweens past…
…and places we’ve been…
…and first birthday parties…
…our beloved Charleston…
…and today, Elfy made his grand appearance!
McCanless’ Perfectly Pink Christmas Tree
It’s not only that McCanless decorated this tree entirely on her own, gathering and specifically choosing each ornament from our big boxes of ornaments…
that makes this tree the most beautiful in the house…
or that it boasts bright silver, pink, gold, sparkly and princess ornaments.
What makes this tree so unique and beautiful is that McCanless didn’t mind if each ornament wasn’t perfectly spaced, carefully “matched.”
The star, which was really an ornament, worked beautifully as a star on top, as she saw more appropriate.
…and the clusters of sparkling balls clumped together all on single branches of her pink tree couldn’t have been more perfectly placed.
Party in the USA!
On Saturday, we met up with Eliza and her family for lunch at the Rooster and we all hit the road to Columbia for the Miley Cyrus concert!! McCanless was so excited and took all morning to find the perfect outfit. She ended up with a pink Miley t-shirt, jeans with a black and silver sequin skirt and her pink chucks. She wanted me to use Mary Clare’s pinkalicious hair gel to make pink streaks in her hair and she wore a sequin flower headband.
Once we arrived in Columbia, found our parking spots and the girls bought Miley t-shirts (and changed immediately), we all walked through the Vista and enjoyed ice-cream cones. The girls were so excited and so ready for Miley!
When we got to the Colonial Life Arena and were escorted through the building and bypassing all lines to our suite, the girls thought they were “back stage” special guests of Miley. Aunt Liz thoroughly spoiled McCanless by finding box seating for our whole crew! It was wonderful! I don’t think McCanless will ever want to do “normal” again when it comes to concerts! I’m afraid this may be her “normal” from now on…
Suite 16 was so very sweet! Let me set the stage…
Bathroom, mini-kitchen, butler, televisions all ours….it couldn’t have been better with so many little girls and their mommies! Thanks so much Aunt Liz!!
Jenny, McCanless, Eliza and Chloe waiting on Miley.
Chicken tenders, nachos, and rainbow icees for all!
McCanless, Eliza, Claire, Jenny and Lily
“Girls Night Out”
“So I put my hands up, they’re playin’ my song…”
Boom, boom clap. Boom de-clap, de-clap.
“When the drum hits, hands on your hips.”
Thanksgiving Day 2009
This year, we did Thanksgiving a bit differently. My mother had her entire family over to her house last Sunday with her siblings and family and my siblings. It is always so fun and crazy with everyone around! We have a large, loud and super fun family!! Since we all gathered then, we all went our own separate ways this year for Thanksgiving Day. I decided that I wanted to cook for our little family of four and stay home. My mom had throat surgery on Wednesday at Duke and I wasn’t even sure if she would make it. I planned on just Mel, the girls and I to spend the day together!
Mary Clare and I woke up and cranked up the crock pots! Did I mention that my oven control panel broke a couple of weeks ago? I had to cook an entire Thanksgiving dinner without an oven! Gas top worked fine, just no oven! (So glad Paula Dean has great crock pot macaroni and cheese and potato casserole recipes! YUM!)
We actually slept in and skipped the Annual YMCA 5K Turkey Trot. The girls were able to enjoy the Macy’s Thanksgiving Day parade with no interruptions. We didn’t worry about getting up, getting dressed and rushing around! It was wonderful!
I even put the girls to work. They made Reese’s Peanut Butter bars for Daddy. I made Key Lime pies for me. I know, non-traditional, but it was my party! I did buy a pecan pie and ice cream for some tradition!
Nonnie was able to come over, although sore and tired from surgery. She had craft hour with the girls while I was able to finish up. They made turkey place cards for the table.
Not bad for no oven, huh? I ordered a cajun fried turkey and I grilled it at home to heat it up!
I made way too much food and we all stuffed ourselves. We had such a relaxing day and just spent it together, cooking, napping, eating, and just being together! We truly have so much to be thankful for!
McCanless in 5K
Below is a sample of McCanless’ classwork. She is really doing great in 5K! She is constantly writing “stories” and letters for me at home, and is actually getting really good at her spelling attempts.
This was on the wall in her classroom. The class created their own “monsters” with paper bags and various craft items. They then had to write about their monsters. McCanless named her monster, MaKayla.
Translation:
I am MaKayla and I am a pretty monster.
I like to eat macaroni and cheese and mashed potatoes.
Flashback…
McCanless always dresses herself and comes up with some pretty interesting combinations sometime; but when she decided on this purple ensemble AND side pony tail, I had to take a photo. It looks like something I wore in middle school! I’m not sure when side pony tails came back around, but I guess it all goes with the leg warmers, boots, frills, and leggings that are back in style and on top of McCanless must have lists. She also loves her “skinny jeans.” I can always count on McCanless to be on top of these things!
Another “pointy” tooth on its way!
McCanless lost her third tooth tonight! She has lost three on the bottom front so far and told me that she’ll have another pointy tooth soon! (permanent) Thankfully, she wants to save it and take it to school tomorrow to show her friends. I’m sure the tooth fairy will appreciate the extra time to gather a few gold coins and fairy dust to place under her pillow tomorrow night. That is, if Mary Clare doesn’t loose the tiny tooth between now and then. She has been begging McCanless to allow her to hold it and play with it and even told us it was “so cute.”
I happen to think my little snaggle tooth is “so cute!”
It’s Official
As of 6:00 pm Tuesday, November 10, Mel is Mayor of Hartsville, South Carolina.
Mary Clare felt it necessary to “help” me as Mel took his Oath of Office. She jumped up from her seat with Mimi, and came running to me with shoes off, paci in one hand and blue sucker in the other. I couldn’t really stop the oath by handing over the Bible and picking her up, so I just watched her grab onto my legs and try to get my attention. She kept saying, “Hey Mamma” until I had to look down and acknowledge her by saying, “Hello, Mary Clare.” She stood up front with us until it was official and Daddy became Mayor.
We were all hoping to celebrate where we celebrate best, Los Tres Amigos, after Mel was sworn into office; but it didn’t dawn on me until after Mel took over that he had to actually preside over the meeting. Whoops, I guess that comes with the title, huh?
We stayed a bit to watch the council meeting but around 6:30, we had to leave to pick up McCanless from dance. (She opted not to attend Daddy’s special meeting. Dance is far more important to her right now.) I took her back to City Hall to see Daddy in his new role, but executive session had begun behind closed doors so this was all she was able to see. By this time, McCanless and Mary Clare had had their fill of City Hall and politics and were like little ants all over the building, climbing on chairs, dancing in the halls and running around barefoot. This was Daddy’s first night on the job, and in the interst of his reputation as a father, we decided not to wait on him and headed out to eat with Mimi and Nonnie. (We’ll break them in slowly.) The girls were dancing and singing as loudly as they could down the steps of City Hall. Ready or not, Hartsville, here we come!
Saturday
For the first time in, oh…. say….,months, I am alone. I’m on the couch, with a cup of coffee, watching Dirty Dancing on ABC Family, (and blogging a bit, of course). It is FABULOUS! We had a great day at the Hartsville Downtown Open Marketplace this morning and even entered Emmie in a dog show! She didn’t win, but she surprised us and behaved very well. I can’t say the same for our girls. We ate lunch and went driving through town with the windows down to gather up a few of Mel’s remaining campaign signs. It has been a great Fall day.
McCanless begged all afternoon to have a sleep over party, and after I refused, Mel gave in to her whining and offered a girls’ movie night. (He can’t help himself. He LOVES to entertain McCanless and all of her girlfriends.) McCanless dressed in her coolest outfit, they grabbed a few Miley CDs, picked up four more girls and took off in the limo. Mary Clare even got to tag along this time, much to McCanless’ dismay. (I’m waiting on the call to come get her any minute now.) The only movie playing was, “A Christmas Carol,” but that doesn’t really matter, I think they all love the limo, loud music and silly Daddy most of all. Mel may be a great businessman, funeral director and mayor extraordinaire, but his best roles are my sweet hubby and Daddy!
Trick or Treat!
McCanless’ 5K friend, Benson, had a Halloween party on Halloween afternoon. Although it was pretty hot and most of the kids shed their costumes, they all had a ball! They ran themselves silly, ate a ton and even went on pony and donkey rides. We finished up the day with a hay ride!
We began our evening of trick-or-treating in our own neighborhood at BB and PaPa’s house. We decided to have a “low key,” traditional Halloween night and forgo a few Halloween parties along with all of the chaos and rushing around. We had a great time going door to door, visiting friends and family in our own backyard!
Our neighbors and best pals, Peyton and Anne-Hackett just happened to show up while we were at BB and Papa’s house, so we decided to tackle our neighborhood all together!
Sweet Pinkalicious tried her hardest to keep up with the big girls!
I think the girls had more fun running and playing and dancing in the streets than actually knocking on doors.
Mary Clare had to try out every piece of candy as soon as she got it! She would knock on doors, get candy, open it, eat it. Every time.
2009 THA Halloween Carnival
I decided to snap a couple of photos of my Pink and Precious Halloween baby girls before we left for the carnival. I’m so glad I did! The carnival is always so much fun and so busy with food, games, huge bouncy castles, pony rides and music! We barely had time to do everything, much less stop to pose for photos! What a fun night!
Pinkalicious
She even had pinkalicious hair!
Princess McCanless
As soon as we hit the doors of the THA Gymnasium, McCanless took off and remained with her friends for the entire carnival. She stayed in the library most of the evening, where the 7th grade hosted a Monster Mash Dance Party.
Meanwhile, Mary Clare found a group of toddlers and her favorite cousin in front of the Emcee and danced her little heart out all night!
She also found many of my former students to “play” with. She loves my students, and she loves the attention!
Just before the end of the carnival, McCanless found her way back to the gym and she and Mary Clare played a few games. We had so much fun! The carnival is always one of my favorite Halloween festivities!
Mary Clare’s 2K Class Halloween Party
Mary Clare attends a 2K class five mornings a week, so her teacher had a party on Thursday and Friday so everyone could participate. (Not all of the children attend all 5 mornings.) Mary Clare was a beautiful princess on Thursday and a USC cheerleader on Friday! (Mommy came straight from school and it just so happened to be Tacky Day. It also just so happened to be the first day I have been able to meet other 2K parents. I’m hoping they assumed I was dressed up for Halloween!)
Mary Clare and Reese
She thought it was funny to pull his tail!
While Ms. Jordan led the children in songs and practiced Halloween sign language, Mary Clare dug in her candy bags. She still has a huge sweet tooth! …Looks like Halloween will be her favorite holiday!
I don’t remember there ever being 12 days of Halloween when I was a child!
I’m worn out and we still have Trick-or-Treating to go! This week we’ve had Red Ribbon Anti Drug week with a different dress-up themed day, three Halloween class parties, one carnival, one Halloween party and two more parties plus Trick-or-Treating to do!! What a crazy and fun week of dressing up! My girls have been in heaven!
Tacky Day at THA
Mr. Jack O. Lantern
McCanless asked me what Jack’s middle name was. When I asked, “Jack Who?” She replied, “You know! Jack O. What does the O. stand for?”
Pouting because she “wanted a turn!”
…then she certainly wasn’t a fan of the squishy insides of Mr. Jack.
Later that night, Mary Clare was amazed at the candle inside of our Jack-O-Lantern!
My beautiful princesses.
…and speaking of, this is not Mary Clare’s Halloween costume. She wore this dress to school today. For a couple of months now, she has only wanted to be “pink” for Halloween, so we decided on Pinkalicious, a character from her favorite book. Gone are the days of my grand plans of coordinated baby girls. They are way too strong willed for that. This year, I tried desperately to get them to be a pirate and mermaid, and for a few weeks when McCanless insisted on being Miley Cyrus, I even thought about dressing Mary Clare as Hannah Montanna! Finally, McCanless suggested a princess. At first, I thought it wasn’t extrememly creative or exciting. They wear their dress-up Princess clothes on a daily basis. But you know what? How much longer are my baby girls going to want to twirl in pouffy dresses and wear crowns for Halloween? I knew Mary Clare would probably not appreciate a coordinating frog costume when big sister got to twirl in her pink dress anyway, so Princess and Pinkalicious it is! McCanless and I found a gorgeous pink sequin dress, fancy shoes , a real crown and jewels for her costume, and I have yet to show Miss Pinkalicious her equally as twirly and new pinkalicious attire! I knew she would wear it out before Halloween! Two twirly, whirly, pinkalicious dresses for my two pinkalicious princesses!
On a different subject, after calling week after week every doctor’s office in SC including MUSC, I was finally able to make appointments for their H1N1 Vaccinations at our local Health Department!! No lines! Hooray!! I am thrilled! We are all now protected against regular seasonal flu and H1N1 Flu!! (Well, Mel and I have to wait for the H1N1 Vaccination, but at least the girls have it!) Mel was busy, as usual, so I took the girls myself. Mary Clare took her stick like a champ, only cried for a second, grabbed her Dora sticker and jumped out of my lap. McCanless immediately stopped smiling when the nurse said, “You’re next.” She had no clue. Mary Clare began repeating exactly what McCanless had been preaching to her. “It won’t hurt. It will only be a minute. Don’t cry.”
McCanless screamed, begged, pleaded and screamed more. She begged me, the nurse, and Mary Clare to take her home. “I saw the needle! You can’t do this!” The nurse asked me if I had a drama queen on my hands. I had to pull her pants down, which was horrific to McCanless, and hold her wrists tight while she screamed bloody murder. When I called Mel about an hour and a half later after dinner, after baths, she was still screaming. She is furious with me, but she is protected!
Hartsville Messenger Endorsement
I usually only post events about the girls and leave grown up/adult “stuff” out of this blog, unless, of course, the girls are involved! This post, however, requires an exemption and a special posting! Read on!
EDITORIAL: In choice for mayor, solutions matter most
By Lisa Chalian-Rock – The Messenger Editor
Published: October 28, 2009
Published: October 28, 2009
Innovation and ideas matter most in tough economic times. Without creativity, Hartsville will remain mired in its troubles. Hartsville needs solutions and someone who is willing to take a chance and think outside the box to tackle the city’s problems.
As some 150 residents saw last week at the mayor’s forum at Coker College, residents have two fine candidates for the city’s highest office. Both have business and government experience, have called Hartsville home for many years and have contributed to and love this community.
Pam Sansbury wants to focus on “common sense.” Her solutions for Hartsville’s finances include reducing salaries, cutting positions and trimming spending. She wants an outside firm to evaluate the city’s computer system to make sure payments and bills are posting properly, and she says the revenue loss seems suspicious and is worth investigating.
“It’s just like running a business,” she says.
Mel Pennington wants to “fundamentally change” the way the city makes money by creating a new stream of revenue with the broadband project he has worked on as vice-chairman of the planning commission. He says infrastructure technology needs to be added to the 2020 plan. He also wants to investigate the coming storm water rate increase before it hits in January. He says he looks forward to working with citizens and with state legislators to utilize all the assets (people) Hartsville has.
Sansbury’s main argument for her candidacy is her experience, that “she’s the only qualified candidate;” however, the current problems grew out of the decisions made during the time in which she served as finance director and on city council. She was in government when the utility fund was raided.
On recreation spending, Sansbury says the budget is bloated. Pennington questions the logic of cutting out one of the city’s gems. The department does charge separate rates for in-town and out-of-town residents.
For the controversial water bills, neither candidate sees the rates changing immediately. Pennington has a plan to address the problem in the long run by shifting the way the city raises money to a more market-based approach. Sansbury sees this as a reason to investigate the city’s revenue loss and monthly financial statements.
While Sansbury wants to start her administration off with a budget retreat in January, Pennington says he plans to start on Nov. 4 with a transition team and a “Day One Plan.”
Pennington already started a list of items to put on the agenda the date the new mayor will be sworn in, on Nov. 10. He said he intends to make the meeting a work session as it is intended to be.
While Sansbury says her retired status is an asset, her attitude didn’t reflect what that implies, that she will take on the job fulltime. She mentioned an open door policy at the Oct. 20 forum, but the hours she noted were minimal at best, just 2 to 3 hours per day.
She says she is focused on accountability and having a goal but only describes a corporate mentality of budget cuts and the elimination of positions.
Pennington focuses on the other side of the equation: revenue. Besides the broadband initiative, he wants to propose a tax rebate for agricultural land adjacent to the city. Once the land is developed, the tax rebate goes away and the city gains a commercial or industrial customer. He cites the Lowe’s on Fourth Street as an example of a property that could have been negotiated in this way.
Sansbury has good business sense and knows how the system works now and has worked in the past, but is that enough to drive the city into the quickly changing future?
If the job of a mayor is to lead, Pennington is the choice. He shows leadership and excitement. He energizes people and could use the mayor’s position as the bully pulpit it is to sway city council toward a goal. He comes to the table with new thinking, alternative, out-of-the-box ideas and, more importantly, real solutions.
His approach tackles the city’s problems from a new direction, and that new direction is what Hartsville needs.
The choice for Hartsville is clear. To go forward, voters must choose the candidate of entrepreneurial spirit over the candidate of comfortable experience.
Prestwood Wiener Roast
Saturday night we headed over to Prestwood Country Club for the annual Prestwood Family Wiener Roast! We had so much fun and stayed way too late!
McCanless met us there with her friend, Eliza. The big girls had a great time!
The “2” crew!
I think Daddy and Mary Clare had 6 hot dogs between the two of them!
Always dancing. Always cheering.
One can never have too many hayrides in Fall!
Today, Sunday, Aunt Liz and Uncle Robert took McCanless to the SC State Fair for more fun! Afterward, McCanless crashed at aunt Liz’s house for a couple of hours, met up with Nonnie, Kacy, Kate and Mary Clare and headed for “Boo at the Zoo” at Riverbanks Zoo. (I told you we were busy with Fall!) Mel and I have had a nice relaxing evening without any Fall Festivities or children! Good thing, I’ll probably need the extra rest to be able to put up with two worn out little monsters tomorrow!
Halloween Bash with BB and PaPa
Saturday afternoon, BB and PaPa took Reese and Mary Clare to a Halloween party! (McCanless was at Eliza’s house.)
More hayrides, pumpkins and fun! We do love Fall!
Mary Clare with one of her favorite THA big girls, Holly!
Reese and Mary Clare on the tractor!
BB and Reese
PaPa
Coker Farms Fall Festival
A little rain didn’t stop us from having a great time at the Coker Farms Fall Festival on Saturday morning!
My little sweet heart loving life…
It’s cotton pickin’ time!
When asked what she wanted on her face Mary Clare replied, “Pink.” She is really, really into pink these days. Only a pink butterfly would do!
We danced to bluegrass, ate hot dogs, picked cotton and played in the rain. McCanless went home with Eliza and Mary Clare fell fast asleep in the car on the ride home! A great way to begin our weekend!
HOORAY!
Mary Clare’s impromptu cardiology visit was a blessing in disguise! Driving down to Charleston, Mel and I were so nervous about the results of her visit. We just couldn’t shake that stomach sickening feeling that you get when you know your baby is sick. Very sick. Although Mary Clare’s Oxygen saturation levels are dropping and she is turning bluer as the months roll along, her heart function/squeeze is great! (For a single ventricle heart, that is.) Her echo looked great and her EKG was perfect! Her little heart is doing fine and now we know that for sure. Whew! In fact, we have been cleared for an “official” clinic visit until Spring 2010! We will, at that point, schedule a heart catheterization to get detailed and very specific heart pressures. Dr. Bradley typically operates within a month after a heart catheterization…so we have a tentative plan and until then, my little blueberry will be at home safe and sound!
Here is Mary Clare getting her echo with Ms. Karen, one of our favorite echo technicians!!
She is such a big girl during her echos and never fusses.
Her oxygen levels will continue to drop as her Fontan approaches, which is to be expected. It’s kind-of a “catch 22.” She needs to be a certain weight for the surgery, but at the same time, as time progresses and she gains weight, it places more stress on her heart and her function may decline. So, although I want her to gain weight for her Fontan, I also know that it means that her levels will continue to drop with the added weight.
I think there must be a fine line as to when the Fontan needs to take place, and I’m sure it varies for each child. Many other hospitals perform the Fontan at much earlier ages, but I have complete confidence in Dr. Bradley and the cardiology team at MUSC. We know that because Dr. Bradley will use synthetic (man made) materials in this final surgery, they will not “grow” with her heart. They must be with her lifelong. So, in layman’s terms, her heart cannot be too small because the materials used will be too big-they must be a certain size to last her throughout her life. Also, we must wait for her to gain weight, but we can’t wait too long because her levels will continue to drop as she gets bigger. (I know, very oxymoronish.)
After our 2 hour long visit at MUSC, we headed to our favorite lunch destination in Charleston, Fleet Landing! It couldn’t have been a more beautiful day!
I didn’t notice this at all today during lunch, but as I was deleting photos, I stopped to wonder what in the world my lens focused on in this particular photo above.
After zooming in I saw the cross on the beach behind Mary Clare, which is exactly what I tried to focus on all day.
Refresher course on the Total Fontan procedure: In a normal heart each ventricle does a separate job. The right ventricle pumps blood to the lungs, the left ventricle pumps blood to the body. In a single ventricle heart, like Mary Clare’s, there is only one ventricle large enough to do the normal job of pumping blood. Cardiothoracic surgeons configure the circulation to maximize the efficiency of this single ventricle. This ultimately requires committing the single ventricle to doing the harder work of the heart, pumping blood to the body. The job of getting blood to the lungs must be done without a pump. Whenever there is only one ventricle large enough to do a normal job of pumping blood, we need to configure the circulation to maximize the efficiency of this single ventricle without overworking it. The “Fontan circulation” refers to this configuration where the single ventricle pumps blood returning from the lungs to the body, and the blood returning from the body travels to the lungs via direct blood vessel connections without a pumping chamber. In any individual child there may be different procedures needed to achieve this goal. – MUSC Children’s Hospital/Cardiology
Funny how plans can change in the blink of an eye…
Yesterday, I called Central Scheduling at MUSC to bump up Mary Clare’s cardiology appointment. Really, it was for my own peace of mind. Her O2 stats have been running in the low 80’s lately, and a few others have noticed her heavy breathing, so I thought it may be time just to have a check up. To my surprise, the nurse with whom I was speaking, placed me on hold to discuss this with her cardiologist. I thought, “Well she must not have much experience with HLHS babies, because this is somewhat normal as we approach her Fontan. If I was that concerned I certainly would have called him myself. He will explain that HLHS babies do this and a November appointment will be fine.”
Besides, her Fontan will be in 2010. Such a very long time away.
What a slap in my face and a huge reality check when the nurse told me that he wanted to see her “tomorrow.” So today, October 22, we’ll pack up and head to Charleston. I’m not exactly sure what will happen, but my mommy instinct tells me that we will have a time frame for her third surgery. Today, I feel ready to tackle this. Yesterday, I kept thinking how awful it was that I haven’t allowed myself to see the signs sooner. That I haven’t wanted to “go there.” Her breathing has become very labored at times. Her little blueberry hands and feet are always cold. Last week on her nature walk in pre-school, she couldn’t go 100 yards before she stopped to rest. Her teachers had to carry her the rest of the way. She naps. She sleeps longer.
When she was born and we knew she faced the three surgeries, the Fontan was the least of our worries. It was the surgery she would have “when she was older” and it seemed so far away. Time slips away quickly and , in a way , I’m glad that I often “forget” that she is a heart baby. I thank God everyday for my little blueberry and all of the happiness she brings to our family.
My little entrepreneuer
…takes after her Daddy! Yesterday, she decided to sell water bottles by the street in front of our house. When water bottles weren’t an immediate hit, she started selling packaged cookies and business took off! She made quite a profit. Thanks Uncle Leon for the generous “donation.” She was so proud of herself and did all of the work herself. She lugged all of the items out, made a sign and stood out by the street for quite some time! I’m sure this won’t be her last road side stand.
The Real World
I laughed yesterday as I read a blog post of a friend. She joked about reading “mom blogs” and how most showcase “picture perfect” moments. Kids smiling in pristine matching outfits, not a hair out of place perfectly positioned in beautiful clean houses with educational toys. Rarely do we see anyone’s dirty laundry, so to speak. Sometimes, we’ll catch a glimpse of the real world in anecdotal type stories meant for a laugh. You know the ones. I’ve written them a thousand times. McCanless shouting out to Father Michael during church, “You don’t say Jesus Christ” is a good example.
I’ve tried to do my best to encapsulate both of their little personalities in this “mom blog,” but I’ll have to agree with my fellow mom blogger, most of the posts are definitely “the picture perfect moments.” So, in an effort to post more of those “true-to-life” moments and being brutally honest, I’ll post about this Sunday morning…
Sunday, October 18, 2009
I didn’t set the alarm, so I woke up very late at 8:00. (Mel, the girls and I stayed up late to watch our Gamecocks loose to Alabama, sadly.) I knew I had just over an hour to get all four of us up, fed, dressed and out the door. I woke up the girls (who were laying beside me along with Emmie, the weinie dog, and Cole, the cat, who must have snuck in) and told them to wake up Daddy, who was in McCanless’ twin bed in her room down the hall. He was doing breakfast today, like it or not. I jumped in the shower, and noticed that we only had 3 towels left. (I’ve got to do laundry today.) I started it last night during the game and only got so far as to sort it out on the kitchen floor…and there it remains still today. McCanless had to wear too small tights, and Mary Clare had to wear too big Sunday shoes. Nothing that a little stretching and a few cotton balls didn’t fix! Mel was on the phone this morning forever with a political mentor, so he was running late and was no help to me after making a mess in the kitchen. As he jumped in the shower and we waited, I grabbed my camera.
Mary Clare fled when she saw my camera and this is where I found her.
In attempts to get a cute Fall Sunday morning photo of my precious girls in their Sunday best (and matching at that), I begged her to come out…
…to no avail. So, I told her she had to come out “right now” and this is the look I got.
One of the two cooperated.
“I’ll get a cute shot of the two of you in front of our beautiful church” lets, go! So, I left Mel, still in the shower.
McCanless was fed up with photos by the time we got to St. Barts, so she ran inside to join her friends at Sunday School and this is how Mary Clare felt about photos in front of the church. Mel ended up getting a call anyway, so he never made it to church. Mary Clare decided to sing, “Twinkle, Twinkle Little Star” out loud during communion and slapped my face when I asked her to whisper. McCanless didn’t have on panties but proceeded to hike up her dress and yank on her too small tights at the altar… also during communion. We dropped the Bible, Mary Clare threw visitor pew cards and mini pencils and McCanless went missing for about 10 minutes during the service. (Mind you, children are only in the service during communion, thankfully.) Mel walks in about 5 minutes before the end of the service. Ironically, the message was about forgiveness today….I think.
My little Cheerleaders!
Fall is rolling right along and we are enjoying the cooler weather (finally) and all that comes with the season (on top of the usual chaos)… football games, fall festivals and parties with hay rides, the State Fair, Halloween planning, election season, of course, and now a family wedding! Needless to say, we are as busy as ever and enjoying life!
Congratulations are in Order!!
This photo is McCanless several years ago when she was obsessed with all things bridal!
I’m sure I’ll need to pull out my wedding album and find her a bigger size dress up gown because she is, once again obsessed with weddings. I think it has a little to do with AUNT LIZ GETTING ENGAGED!! We are so thrilled and super excited, especially McCanless! She happened to be at her best friend, Eliza’s house when I found out, and when I called her to tell her the great news, she shrieked, dropped the phone and I could hear her telling Eliza that she was going to be a flower girl. “Can you believe it?” she said, then squealed again! Congratulations Aunt Liz and soon-to-be Uncle Robert! We are so happy for you! We love you both!
The Latest on MC…
This was taken after church on Sunday, instead of a nap!
Mary Clare refuses to swing in “the baby swing” now. She insists on swinging, everyday, in “MA-CAN-LESS-ES” swing.
Thankfully, we have had an uneventful year health-wise for MC. She continues to grow and function just as any other “normal” two year old. (Her little half-heart has been fine. It’s the hitting, screaming, raging tantrums and NON-sharing that I’m having the most trouble with, which make my own blood pressures rise.) Lately, however, I have noticed that her breathing is getting heavier, her lips a little bluer and she gets tired a bit quicker than she would a few months ago. At first I chalked it up to a possible cold, playing harder and trying to keep up with McCanless, but now I have allowed myself to realize that it is, in fact, my little blueberry’s half heart. I have had her oxygen saturation levels checked once a week for the past 6 weeks, and she is consistently running in the low 80’s. Her norm has been typically high 80’s.
I know it is coming, and I’m actually ready to have a time frame. It will mark the third and final surgery. The end, for a while. Hopefully.
The “tell all” for the time frame for the third stage surgery, the Fontan, is typically weight gain. She has hovered around 25 pounds for forever, so it seems. Her cardiologist would like her to be 30 lbs, but if her sats continue to drop or if another issue arrises, they will continue with the third surgery. We have an appointment on November 17 and will have many questions answered then with possibly a catheterization date. I find peace in knowing that the time is approaching and I welcome the new year and getting this phase behind us. Until then, we’ll continue swinging in the big girl swings, dressing in all things pink and sparkly, learning how to share, and laughing with our funny little blueberry! She has the best belly giggle!
My Dizzy Girl
This photo is from McCanless’ Dance Company Photo shoot.
She looks like such a big girl!
McCanless thought she was hot stuff when she was able to get in the photo with the big girls. She loves it! This is a photo of all of the girls. (Competition Dance Teams- Petite, Junior, Teen and Senior Dance Companies)
A few behind the scenes shots…
Apparently, McCanless thought something was funny.
Of course, Mary Clare wanted in on the action.
My Funky Heart pal, Steve, found another moving article today. Go here to read about one mother’s wish.
You know, I’ve been a blood donor for as long as I have been legally able. When I gave blood for the first time at age 18, my motives weren’t quite as heroic as it sounds. It was a chance to get out of class and gain points for the USC vs. Clemson blood drive when I was in college . If you live anywhere near SC, you know giving blood for your SC Gamecocks to win against Clemson in ANYTHING is the least you can do! After that, I gave blood because I felt special. I have type O negative blood, and the Red Cross always called me when my 45 days between donations expired. They literally begged me to donate. Pretty selfish of me to actually think that I was special merely because I gave blood. The older I got, I began to realize that what I did made a difference. I began to feel that it was my duty to help out. In my naivety, I was proud of myself for donating blood. My hopes, back then, would be that one day if I needed blood, good karma would follow. Never in a million years, would I have ever expected that one day I would be at the mercy of other blood donors as my Mary Clare received multiple blood transfusions and received so many pints of blood during her hospital stints. My child, not myself. That certainly humbled me and brought me to my knees, literally. My youthful mind and immature ways of thinking often haunt me to this day.
I thank God for those that gave blood for my Mary Clare. Wouldn’t it be awesome to know exactly whose blood she received, so I could call them and thank them personally, although words would never begin to describe the gratitude I have.
All of this rambling about blood donations leads me to the article I mentioned previously. The mother is waiting on a heart for her son. She asks a bold question, “Why are people dying every day when perfectly good organs are being buried in the ground?” Good question. Her son is on a transplant wait list because he is in heart failure. His heart didn’t adjust well after his Fontan surgery, which is the exact same surgery that Mary Clare will have soon.
It is almost silly that everyone isn’t an organ donor. Thankfully, I have an outsider’s point of view. So many HLHS babies require heart transplants, and right now, Mary Clare is not one of those babies. Living with a half heart has it’s own downfalls, but she is overcoming those. I hope and pray that she’ll never need a transplant, but I’m not taking any chances. I’m an organ donor, and I would certainly give her my very own heart today if needed. I know that isn’t possible, but my hope is that if she ever needs a heart that somewhere, someone would feel the same way.
If you are not an organ donor, please go here. (There is even a USC vs. Clemson competition going on right now!)
…and if you need another reason, click on Owen’s button below. He is a sweet HLHS baby boy also waiting on a heart.
…or click on Paul Cardell’s button below. He is a father and wonderful musician with a CHD who just received a heart!!
Quote of the Day
“I’m in Graceland!!”
Which is exactly what my mother yelled into the phone when I called her today. She and her sister flew out yesterday morning to visit the birth place of the King. Although she would never admit it in public, she was utterly thrilled!
Being the mom of four children never left her much time to travel, although she has sent all four of us out of the country and across the country on many occasions. I’m glad it’s finally her time and she can begin to check off her own To- Do list! Graceland-Home of Elvis Presley being top on that list! Who knows? Paris may be next! Have fun mom, you deserve it!
Signs of the times…
I once wrote about McCanless’ knowledge of iPods in 3K in a post entitled, “Signs of the Times.” Yesterday, Mary Clare threw me for a loop when I realized how quickly children learn and adapt. She and I were looking through photos on my laptop. She wanted to see a photo of McCanless in a princess dress that we previously viewed. She grew annoyed with me because I didn’t go back to that specific photo. She grabbed my laptop and brushed the screen to scroll back up, which is exactly how the touch screen iPhone operates. I had no idea she knew how to use my iPhone. To test her, I handed her my phone. She pressed the button to open it up, slid the touch screen bar to unlock the home screen and then began to scroll through my application icons and opened up the several children’s applications and songs I have saved on it for her. Wow. I knew McCanless had become a pro on my computer and iPhone, but I had no idea Mary Clare was well on her way as well.
Silly girls…
McCanless grew tired of my photo shoot after one shot…so she moved on.
iPhone Junkie
So I moved on to MC, my camera ham.
Post #808 deserves a WOW. Here it is…
Go to Adventures of a Funky Heart, whose author just so happens to be an adult CHDer from South Carolina, and read!
Who knew…
…nightly homework begins in 5K? 5K homework, for the record, consists of 10-20 minutes of reading her chosen library book or class book, usually one math practice sheet or game, and a vocabulary assignment (usually writing rhyming words with her weekly vocab) Not too bad at all. For now.
Fortunately for everyone, McCanless actually likes doing homework. For now.
Unfortunately for McCanless, little sister also loves doing homework.
Which means McCanless’ homework usually has a few extra marks here and there, much to her dismay.
This little piggy went to school…
It’s no secret that we love sweets around here, especially cupcakes! McCanless and I whip up a batch of cupcakes or muffins almost weekly! (To give away, of course.) The cupcakes we made last night were worthy of a post.
I found a website tutorial on how to make cute piglet cupcakes with strawberry icing and big, pink marshmallows. Those would have been super cute IF I had strawberries and IF I had big, pink marshmallows. Which we did not, so we improvised with what we did have: Halloween M&M’s, food coloring and fruit roll-ups. McCanless actually came up with the idea for the ears. I thought they turned out pretty cute! (Even cuter than the fancy marshmallow cupcakes online!) AND McCanless did them all by herself. Mostly.
FYI Ms. Susie, McCanless’ teacher, loves pigs and McCanless’ classroom is filled with piggy paraphernalia. Hence, the piggy cupcakes for her class.
A little practice on the cutting board before she began the real deal…
Meanwhile…
“Who me?”
Redfearn Tree Farm
Fall is the best time of the year to go to the cabin out on BB’s family’s tree farm.
Double Trouble, or as they call them in their 2K class, Bonnie and Clyde!
We love going out to the cabin! It’s so beautiful and peaceful!
We had a great time with the Bensons last weekend!
McCanless with the camera…
Go Coxes!
Mary Clare cheers for the “Cox-es,” which is exactly what McCanless did as a toddler! I guess remembering if we are cheering for the Foxes or Cocks can get tricky!
Cole, the cat
This is Cole.
I thought it was high time for a post on babypennington.com devoted entirely to him. Cole has been my cat for over eleven years now. That means he was mine before Mel, marriage, and motherhood. He is a big old lump of loud purring, annoying head bumping, snuggling fur, and I love him dearly. He was born a country cat in Ashland, moved to the big city of Columbia and became an indoor cat where I failed at all attempts to toilet train him. Now he is an indoor/outdoor babysitting creek cat who thinks Emmie, the wiener dog, is an idiot. He is fabulous.
The family that campaigns together…
Last Thursday night, we headed over to the Coker Soccer Field for their annual Taste of Coker. Lots of kids, lots of food, a huge open space for running with music and cheerleaders to boot. It always makes for a great time! This year we decided to use this opportunity to do a little campaigning, too! Go Mel!
McCanless wouldn’t wear her “Mel for Mayor” shirt! Does it really begin this young? She ran around with her friends and avoided us most of the night. I thought we were pretty cool parents? Well, you know, except for the matching family shirts and all. The “Go Mel” painted on my face probably didn’t help either.
Perfect Beach Weather!
We do love the fall…
and we love that we can still have fun at the beach…
in the fall!!
…and do we ever have fun at the beach!!
Proud Mamma…
McCanless’ teacher told me today that she has the neatest handwriting in 5K! She received a sticker and her work was displayed in front of the classroom. When I asked McCanless about it, she said, “Yeah, I know.” No big deal to her, but her mamma is thrilled and so proud. Mel told me that he also had the best handwriting in 5K, way back when. I wonder if that is because his teacher just happened to be his mother!!? (I’m sure, if you have ever seen Mel’s handwriting, you know that I’m joking. His writing in immaculate!!) Like father, like daughter in more ways than one!
My little dancer…
McCanless has had a couple of busy, dancing weekends! Last weekend, she had Petite Company try-outs on Friday and a workshop on Saturday. This weekend, she had the company photo shoot and production weekend, which meant two days of dancing. She couldn’t have been more thrilled. My big girl is quite the dancer these days!
This is Kate from the Senior Company and McCanless’ new idol. Funny thing is, I remember Kate when she was born! Her mother was the music teacher at my high school, and now Kate is back in Hartsville for her senior year in high school and is McCanless’ “big sis!” She is such a great dancer. McCanless and I both love watching Kate.
Petite Company girls
I doubt “Tour of Homes” would stop by our house…
A few nights ago, I took a moment to walk around the house to assess the damage. The girls were playing in the tub and I had a few moments to straighten things up a bit.
Have you ever had one of those moments where you felt you didn’t know where to begin, so you didn’t?
I decided to take those few moments, not to quickly pick up the house, but rather photograph it. I just know one day, one day, I’ll miss seeing evidence of this chaos called my life, and I’ll miss it. Right?
Taco Night with Mary Clare
Kindergarten Art Work by Mary Clare
Labels, labels, labels. Let me explain. One of McCanless’ homework assignments was to label our house. She was to start with her bedroom and slowly work her way around the house. I assumed she would use words like wall, door, bed, etc., but you know McCanless. On day one, she wanted to label every single item we owned. We went through hundreds of notecards and tape until I realized that mailing labels work wonderfully. I can print off exactly 100 at a time and let her have at it! Mel only protested when he realized that the toilet had too many labels. (She insists on labeling not only items but each part of that item as well…toilet, top, bottom, side, etc.) So now our house dons hundreds of mailing labels.
Phonetically spelled signs on doors by McCanless that are so fun to decipher!
"You haf too do this. Mile Siris and Hannah Montana on my dor."
Before entering, you must press a photo of either Hannah Montana or Miley Cyrus to be able to enter McCanless’ room.
Groceries waiting to be put away. It was one of those days. I barely made it inside with the girls, groceries, all of the stuff that accumulates in the car throughout the day, before it began to rain. I threw the groceries on the counter and put away the fridge items and left the rest. Apparently. I guess I never got back around to finishing. I had to take a photo because if you’ll notice, almost every item is upside down! Typical.
I walked back around to the bathroom because it grew quiet. Never a good sign. I noticed wet, soapy footprints on the floor. Apparently, the girls were concerned and came looking for me. So much for straightening up, I’d much rather rinse soapy heads and read bed time stories! Those refried beans can be scraped off of the table when they go to sleep!
Wow, that’s high!
So yes, Mary Clare likes to dress up in my clothes these days, along with any and every princess costume we have. Here she just so happens to have on one of my camisoles when she decided to perform for the camera. Go figure. (They never perform on demand or when they are in an adorable outfit with matching bow now do they?) Oh and never mind McCanless’ Elvis impersonations. I don’t even have a good explanation for that one. Again, go figure.
Mary Clare’s first day of 2K at First Baptist Weekday Preschool
We all packed our bags and headed out the door together this morning. Even McCanless was bright eyed and bushy tailed! (Probably because it was a 9 AM, an hour later than when she and I have to be at Thomas Hart.) After today, Daddy will get the morning task of delivering Mary Clare to 2K. This is probably the last day she’ll be coordinated and on time.
“How old are you Mary Clare?” She held up her hand of “Five” but said two.
Below is McCanless on her first day of 2K..
Reese was there when we arrived in the parking lot. We were the first ones!
Mary Clare grabbed his hand and marched him right up to the door like she knew exactly what was going on. I know this is going to be a great year! We love Ms. Jordan, their 2K teacher!
McCanless also attended FBWP in 2K and 3K. She felt it was her duty to show Mary Clare and Reese the ropes. She even pointed out to Reese the principal’s office. Which is quiet funny considering she visited Ms. Jane there once herself in 3K.
Poor Reese. He just didn’t want his Mommy to leave at first.
Mary Clare didn’t hesitate. She began playing immediately and never once looked my way. McCanless and I snuck out just in case. Although, I’m really just telling myself that. When I arrived at 12 to pick her up, her teachers told me that she had the best time and never once shed a tear or looked for me. Oh, well. I guess that’s a good thing, right? I,however, shed a few once we left the parking lot. My sweet baby girl is in school.
So, this is how I left my baby girl. On top of blocks explaining to Ms. Jordan that she was “on stage.” All the world’s your stage, sweet Mary Clare. Mommy is so very proud of you.
July visit with Mimi and Bapa…
In July, we met Emerson’s (Mary Clare’s first and best heart friend) family on Hilton Head Island for lots of fun in the sun! Later in the week, Casey, Molly and Will joined us for lots of fun with the Haarlow crew!
McCanless and Lauren, Emerson’s first cousin, really hit it off and had such a great time! I’m so thankful that this family is in our lives!
After a day at the beach and pool, we all went to Harbour Town to see Shannon Tanner play!
Erica, Emerson, Mary Clare and me…Mary Clare was having way too much fun to stop for a photo opp.
The girls ran themselves silly and were such a mess! What low oxygen levels??
Two heart grands…Mary Clare’s Mimi and Emerson’s Nana.
The ladies at Forsythe Jewelers in HH have been following Mary Clare’s story and wanted Mimi to introduce all of us. They were so sweet and treated the girls to such cute bracelets and rings especially for little girls!
Mimi treated Molly and McCanless to a night at the Main Street Children’s Theater. They saw Charlie and the Chocolate Factory and each came home with golden tickets!
“Lady Ride” with Bapa is always filled with laughs!
Nothing like sprinklers and popsicles!
“Baby Weel” as Mary Clare says.
The neighborhood gang!
The infamous McCanless pose…
…and Mary Clare’s attempt. As usual, trying to emulate her idol.
On to Shelter Cove to see Greg Russell play!
Case and Will
We love summer on Hilton Head Island with Mim and Bapa and our Haarlow cousins!
Thank Heaven for little girls…
Another great thing about living in our little Black Creek neighborhood is all of the girls! We all know each other in our neighborhood, quite well, (almost too well) and within the four houses on our corner, three of the four houses contain two little girls! That’s six little girls between the ages of 2-8. It’s no wonder you often see little princesses in sparkling shoes running between our houses, sharing pink scooters, and swapping dress-up clothes. Last night, one of our neighbors invited us over for movie night. We walked over to their backyard, which was whopping 58 steps from our driveway to theirs; I counted! Their dad set up a “Screen on the Green” backyard style! We stuffed ourselves with popcorn, ice cream, and cookies while watching Barbie Mariposa under the stars.
Mary Clare is still not impressed with animated anything (not even princess movies.) She was more into dressing up…
…and eating sweets!
Dancing as the credits rolled on and Barbie music blasted throughout the neighborhood…
Sweet Sundays…
Nothing like a Sunday afternoon nap after church, especially with this view.
If I lay on my left side on my bed, this is my view. Through the doorway, through the hall, through the playroom and into my sleeping babies’ room.
A closer peek…
…much needed after McCanless’ late night, last night. After our own church service, I drove to another local church right down town, which is attended by many, many of our friends, by the way. (If you recall, McCanless spent the night with her bestest pals Eliza and Jennie last night.) I was to meet them in their church parking lot for the kid exchange. I drove up and McCanless had on winter boots, the Sunday dress I packed and tangled, sweaty hair. Okay, it could be worse, I thought. At least she had on a dress, and she was probably just hot and sweaty from playing outside…at church…and the boots, oh well. When McCanless saw that I was there to pick her up, she immediately began to cry, to put it nicely. She was an utter, blubbering mess. I literally had to drag her to our car. She did not want to leave Jennie and Eliza. Her pals’ mom began to tell me that they had wonderful time and were all in bed by 10:30 (Yikes), except McCanless (Double Yikes) She just wouldn’t go to sleep. I even left the t.v. on all night for her.” (Okay, so now I see the problem.) Mom then tells me the “funniest story.” “All of the girls stood up in front of church during a baptism, ran circles around the church squeeling and then just ran right out of church.” (Tripple Yikes) So it should probably be no surprise that not only is this one of the biggest churches in town, many of our THA families attend, AND it just so happens that Ms. Susie, her brand new 5K teacher is a member of the choir. Needless to say, naps are mandatory today.
Miss South Carolina visits THA…on the web!!
Go here to see a clip of Miss SC’s visit to THA last week. McCanless is still talking about her! At about 1:44 you can see my little McCanless on the very front row with a big pink flower in her hair.
Just a journal post…
No photos, just a quick update as I wait on Mel, as usual. Tonight we are going to an annual “Pre-Football Kick-off Party…while we are all still undefeated,” as the invitation reads. It’s always fun to see how many of “Mel’s” Stadium pants and skirts show up at the party. I’m sporting my garnet USC skirt, which just makes me so excited and so ready for USC football season!!
We had a great Saturday today. Much needed after our usual week of dance, church, homework, life. Mel took the girls to the Midnight Rooster for waffles this morning and then headed over to Byerly Park for “Bark at the Park,” a 5K fundraising race benefiting the Darlington County Humane Society….great cause. Mel was to present the awards, and from what I’ve heard, McCanless and Mary Clare upstaged him and stole the show. I have yet to get the true story from Mel, however. After lunch the girls and I hit the pool, with everyone else in town. About 4 hours later, sun-kissed and waterlogged, we loaded up with the Fort girls and headed home. (It seems we never leave the pool without a pal or two with us.) We played around outside for a while, I threw all four girls in the tub and it was time for pizza!! Mel is now on his way back to the Fort house to deliver McCanless, Eliza and Jennie for a sleepover over there. He’ll drop off Mary Clare at BB and PaPa’s house and we’ll have a few hours alone for the first time in probably 6 months. Life is busy. Life is crazy. Life is great.
It’s that time of year again…
Thomas Hart Academy Sally Foster Wrapping Paper Time!!
It’s August and just as stores are beginning to flood the isles with Halloween costumes and decorations, it’s now time to think Christmas! (Let’s just forget about November all together, shall we?) If you want to purchase Sally Foster wrapping paper (and help out THA) just log onto www.SallyFoster.com, buy away and plug in McCanless’ seller ID. McCanless will certainly appreciate it when she receives her special plastic participation toy! More importantly, I’ll appreciate you helping out our school!! Thanks so much!!
McCanless’ Seller ID: 280988
A few McCanlessisms for today…
Kelly Sloan, Miss South Carolina and Miss Hartsville visited THA today and read to all of our classes. McCanless was most excited to explain to me what she was wearing! She was super impressed with her sparkly crown, short black hair and beautiful clothes. “MOM, she even had on Jimmy Choos!” Floored, I asked her how she knew and why she cared that our state beauty had on designer shoes!? She said, “Well, I asked her.”
Tonight at the dinner table, she was very inquisitive about Daddy’s race. Mel was working late, so I explained as best as I could all of her questions regarding the upcoming Mayor’s Election. Over every other bite or so, she would stop and ask when Daddy would be in charge of Hartsville, or if that meant she could do whatever she wanted in Hartsville, or if we had to move to the White House. (Hmmm, not yet. Apparently, she has higher expectations for this race than any of us.) She continued to quiz me and finally asked me where Daddy was running?
“Daddy is running in this race. How long will it take to get there?” “Does he have to run around Hartsville like in the Turkey Trot?”
Week in Review…
After the last few school-free, summer nights (like those at Hartsville Idol above)
…we had a hugely successful “Screen on the Green” fundraiser for the American Heart Association…
…where over 400 people gathered on the lawn of Burry Park to watch Kung Fu Panda…
…and Mel…
…we also had an impromptu photo shoot that I wasn’t thrilled about at first…
….a few behind-the-scenes photos….
…because it was just hours after my first work day back at school…but I did lighten up a bit, see? (I was laughing at the girls rolling around on the ground.)
…and speaking of first days of school…
McCanless is still not a morning person….
5-year-old Kindergarten started out rocky….
…until she found her pal, Eliza, and met Ms. Susie’s pet, Fluffy.
…and speaking of firsts. Mary Clare had her very first day of dance class, on McCanless’ very first day of kindergarten…
…to which I was just a wee bit late in the pick-up line because of Mary Clare’s dance class.
Reese, turned two!!!
…and Mary Clare learned all about mascara.
Tonight, we are all tuckered out from our first official full week back at school…
…well, that and Mel’s blue jeans, barbecue and bluegrass party officially announcing his run for Mayor last night.
…great food, great band, great friends. Former SC Governor, David Beasley introduced Mel. Mel did what Mel does best, spoke and entertained a crowd…
Mary Clare was more impressed with the biscuits, however.
Today, we all went to the City Hall to watch Daddy officially file for the Mayor’s race. We even had photos taken by the Hartsville Messenger. McCanless thinks Daddy is famous because he has been in the newspaper and on TV13 news. I told her that Daddy doesn’t hold a candle to her. She and Mary Clare have way more followers than he does!
…so Mel is out alone tonight, emceeing “Rock the Block” at Burry Park while the girl’s team settles in. We do have a busy weekend ahead…we missed the Red Fox game tonight, but there’s always Hartsville Idol and the Antioch Rodeo tomorrow night! We are also hitting the road for a very special birthday party in Augusta on Sunday! Mary Clare’s best heart buddy, Emerson is two tomorrow!!
“Hartsville Idol”
Last week, we all went to Hartsville Idol. (Yes, Hartsville’s very own version of American Idol complete with judging and weekly eliminations!) It has been great fun to gather every Saturday night with so many other families in Burry Park and listen to great (and some not so great) local singers. Last week Mel took the stage during “Idol” to announce a fundraiser for the American Heart Association, “Screen on the Green.”
Screen on the Green, has been something he has wanted to do for over a year now, and it finally came to fruition this week. I was quite impressed, so I’ll toot his horn… The whole idea was Mel’s; he found sponsors, and rented the huge screen. He arranged to give out free popcorn and drinks to everyone. He also created the posters and fliers, and spoke at the event. It was a huge success!
Mel and McCanless handing out Screen on the Green flyers.
Back to school, dance, church, political races…the usual.
So much going on. So little time to share! I will get around to it, once I get back into our routine! Whew, summer has been hard to break this year!
I literally could have killed Mel yesterday.
Until I saw this.
Yesterday, at 4:30 after my first grueling day back at school, Mel texted me that we would have photos taken with Steve Roos at 6:30. “What day?” was my reply. Tonight. After a slight fit on my part and kicking and screaming, I agreed. Wouldn’t you know it. It happened to be Monday. In Hartsville, every boutique, every children’s shop, EVERYTHING is closed on Monday. No new photo outfits for this photography session. I had to throw together whatever I could find. I usually pride myself in perfectly coordinating outfits for my brood on two occasions: Sunday and Photography. (Those are the only chances I get with McCanless.) I couldn’t decide if we should break out the new fall wardrobe or find what was left of our too tight, too bright, summer wear. The 100 degree weather and 100% humidity decided for me. I threw on the usual, jeans and a t-shirt that I happened to wear to school that day, bathed the girls and even let McCanless decide what to wear. We were smiling and walking down Laurel Oak in downtown Hartsville by 7PM, and it couldn’t have turned out better, even if last minute. If I do say so myself.
It’s amazing how life changes with the seasons.
Summer 2009
Winter 2008
A family swing photo wasn’t taken in 2007. I imagine I was a bit overwhelmed with bringing Mary Clare home after her birth and first surgery in the summer months and anticipating her second surgery which was in December of 2007.
Fall 2006
This last photo was a Christmas card telling the world of our new addition, sweet Mary Clare. When this photo was taken I was about 14 weeks pregnant and had never even heard of Hypoplastic Left Heart Syndrome.
Tally Ho Equestrian Camp 2009
McCanless had a great time at “horse camp” this week, and we were so proud of her at the show-offs. She has ridden ponies a few times at birthday parties, but this was her first time ever learning to ride and actually riding alone. She wasn’t nervous at all and seemed so at ease on her horse, Freckles. Mommy was a bit nervous when she took off of the far side of the pasture alone, but she handled him well, and came right back around.
There is a first and a fourth for everything…
Mary Clare’s first haircut.
No, we don’t make a habit of going around town barefoot. She simply made herself right at home, as she does everywhere, tossing her pink Chucks on the floor.
She looks pretty content, but what you can’t see are all of the books piled on the counter that I had to read to her, toys to keep her distracted, stylist tools in her lap, etc.,etc. We also had to stop midway and allow her to twirl in her black “Princess Cape.”
She sat so still for the haircut (well, most of it anyway) that she would not stand still long enough for me to get a shot of her sweet face with her new do…this was about all I could get.
McCanless’ fourth professional haircut. Honestly, she has had only six hair cuts in her entire life. Four professional haircuts by certified true stylists, one safety scissor “self-do” days after her fourth birthday which resulted in a mega mullet and one trim from Nonnie to “shape up the ends.” That’s it! Moments after her trim, she requested a ponytail, so I didn’t get an after shot of hers either, although there isn’t much to it. She made Ms. Stylist promise only to take off a fraction. “Girls have long hair, you know.”
‘Too Much Trouble to Even Attempt’ Bake Oven
I’m not sure who invented the so called “Easy Bake Oven.” Betty Crocker, maybe? I don’t really care, although I must say that if the toy makers who did invent it, continue to put it on the market, they must change the name to suit it more appropriately. If anything, to warn mothers. It seems to have become some sort of rite of passage for every girl to have at least owned an Easy Bake Oven. I remember mine; although I don’t remember my mother helping me bake with it. I’m sure she must have. The directions are way too complicated for any five-year-old to follow. I also remember all of my friends having their own Easy Bake Oven. McCanless has hers thanks to Aunt Kate this past Christmas. Although it has morphed into a more modern looking machine, it is still the same plastic box that only holds one pan at a time which must be shoved in and out with the yellow “Easy Bake Oven Wand.” No real working buttons. No door. I vow here and now to buy every one of Kate’s children their very own Easy Bake Oven. I just hope it doesn’t get fancy and “Easy” by that point.
It isn’t so much the mess that ripping open packets of powdered frosting and batter make, or even the dozens of tiny bowls, miniture spoons, or doll sized spatulas required that are hindersome. What really bothers me is that after spending three hours measuring “1/4 teaspoons” and drops, and shoving cake pans into the side of the oven with that double sided hook arm “wand,” and prying cakes and cookies off of tin with bent spatulas, you get two quarter sized cookies and one pancake size cake. Not even enough to share. Although, McCanless always finds a way to cut and serve her very own “homemade” baked treats to all of us. Very “Five Loaves and Two Fishes” reminiscent. Last night, I had a piece of cake no bigger than a crouton. Hardly worth the effort put into helping her make that crouton sized piece of cake. I will say, however, even though we bake together often in our “big people” sized kitchen, there is something special about pulling out that Easy Bake Oven with all of its miniature paraphernalia that is just different from whipping up an adult sized batch of brownies or cupcakes.
I have never taken the time to photograph McCanless with her Oven in all of her glory, party because I’m trying to keep Mary Clare away from the burning light bulb and decorating goodies located ever so conveniently for her on the playroom table. Mary Clare will have her own turn one day. Maybe her very own Easy Bake Oven.
I guess I should photograph McCanless with her treasured Oven and her fresh baked minuscule goodies. Someday she may be doing the same with her little girl and I can assure her that yes, I did help her with her “Too Much Trouble to Even Attempt” Bake Oven. So, I guess all and all, it is worth the trouble.
Remember this? I googled and found this image, which is exactly like the Easy Bake Oven I had as a child. Circa 1982.
Dance Camp 2009
McCanless attended dance camp this summer and had a blast. As you can tell, Mary Clare did too! Every morning, Mary Clare would pull out her tutu for dance when McCanless got ready! I had to let her stay for the daily warm-up so she would think that she went to dance camp too!
Last week before school begins…
Hopefully this week will help kick us back into some sort of routine! McCanless is going to Equestrian Camp every morning from 8-12! Nothing like squeezing in one last summer camp before school starts, right!?
P.S. I left my camera battery charger cord (say that three times fast) on Hilton Head Island, thus the recent photo-less posts! Not to worry-Mimi is, as usual, sending all of the left behind loot that we left last week. Thanks, Mimi!
Whew…
Dare I say I’m almost ready for school to begin? We have had a fantastically busy month, have more freckles, more tan lines, and are utterly exhausted! We’ve just returned from a 10 day Hilton Head Hiatus, and boy do we have a long way to go before we are all ready for the “school schedule” to kick in. I have exactly 11 days to whip our internal clocks in order, purchase items on our massive back-to-school supply lists, stock the house with lunch box essentials, and reverse summer slack slouching habits.
I know that I’ll soon be counting down the days until Thanksgiving, then Christmas vacation to break the routine, but for now, I’m ready! Bring on the bell schedule!
Sweet, Sweet Child…
Just had to take a moment to “jot” this down…
McCanless has had her fair share of humorous church stories, although some didn’t quite seem so “humorous” at the moment. And over time, our fellow parishners have learned to chuckle quietly at McCanless’ and Mel’s Sunday morning antics. And now, my sweet Mary Clare is in on fun. Sometimes I have to sit in between Mel and McCanless with Mary Clare on my lap to keep them all somewhat behaved and seated in the pew. Thank goodness the girls are only in the service for communion every Sunday, which is certainly enough.
This Sunday after the service, as usual, I had sereral folks tell me how much they enjoy watching my family in church. Tongue in cheek, I’m sure. (We do sit in the very front pew, directly in front of Father Michael and in perfect view of the entire congregation.) There were also three very sweet ladies who said they adored listening to Mary Clare sing. She usually belts out her own melodic version when she hears our choir singing hymns. This Sunday, they said they were so touched to hear her loudly sing, “I WUV JE-SUS!” What a sweet, sweet child, and I agreed. Of course.
What I failed to mention, and I hope this doesn’t mean I was lying in church, is that she was belting out lyrics to a Taylor Swift song. “I WEAR T-SHIRTS.” Apparently, Mel and McCanless found it entertaining to whisper a few lines in her ear only to hear her finish the chorus so loudly in her “sweet, sweet voice” it nearly overpowered the choir…over and over and over and over.
The baby boys…
Nope, that’s not a dress-up fur stole McCanless has on in this photo. They are the newest addition to our family. A set of fuzzy, yellow, twin kitties born on the Woodham Farm that, apparently, I promised her a couple of months ago. I’m not sure why, how or when this “promise” occurred, although I suspect Nonnie had more to do with it than me. Nonetheless, we picked them up from Nonnie’s house today and brought them to live in the city.
Meet Beau
and Ty.
The Paci isn’t going anywhere anytime soon…
…but the diapers just may! Mary Clare has done so well with potty training! In fact, yesterday when I realized that I had forgotten to pick up a prescription, I threw Mary Clare and McCanless in the car to rush out, and I completely forgot what Mary Clare was wearing. We made it through the pharmacy and on to Wal-mart before I realized that she had on her BIG GIRL panties!! Then I thought, what better place to “roll the dice.” If she were to have a “whoops,” I could just buy new panties, right? So, we took our time and I didn’t worry about it. McCanless even looked up her back-to-school supplies. We loaded back up to head home (with washable carseat cover) and WE MADE IT HOME! No accidents!
Big girl beds, big girl panties…if only they made a big girl paci. How in the world am I going to give that up? Advice is certainly welcome.
2009 4th of July Week with the Woodhams
We spent another fabulous week at the beach with the Woodham crew…
Happy 4th of July!
William and Kacy
We even hit the water park…
McCanless and Kacy racing down the racing slide, one of the fastest and tallest slides at the water park! (Kacy won)
Crazy Kacy
Kate and the girls ready for the beach!
We even made stepping stones with the girls’ handprints…until Mary Clare decided to go impressionistic on us.
Updates…
I’m updating from the couch in the den in front of the television that I’ve forgotten how to turn on as the girls sleep in their bedroom ALONE. If you aren’t quite familiar with our usual sleeping arrangements, let me clarify. The girls are asleep in their own beds in their own room alone. For the first time since I became pregnant with baby number two and realized that our children would have to share a room, I think it may actually work. If both girls sleep through the night without waking the other and if I don’t hear a thud and tiny foot steps running down the hall to our bedroom tonight it will be a miracle. If we all wake up in the same spot that we all fell asleep in, THAT will be a miracle. It is working at this moment, which is usually how we operate. I did have to lie down with Mary Clare in one twin bed while holding McCanless’ hand in the other twin bed until they both fell asleep, as did my arm. BUT, it worked. Dare I attempt to get a sweet photo of my girls asleep in their room in their twin beds? Don’t think so.
As far as the potty training goes, if it were possible to remain at home for an entire 12 hour stretch, it just may work. Dance camp, grocery trips and pool outings have just gotten in our way. While we were home today, Mary Clare wore her panties, or birthday suit. She never once had a “whoops” and went to the potty several times, even without me reminding her. Of course, she always reminded me to give her the Potty Prize, a Skittle. I’m just not ready to venture out without a diaper just yet. This was much easier with McCanless, without the added distraction of another child, that is. We’ll see.
The Peach Festival at McLeod Farm
We had a great weekend! Mel was able to go with us to the Marketplace downtown AND the McLeod Farm Peach Festival on Saturday!
Peach Ice Cream, Peach Enchiladas, Peaches, Peach Shortcake, Peach Lemonade, Peach Bread…
McCanless calling her friend, Eliza, to make sure she would be at the pool later on…Is she really only five?
The Ag Simulator!
Mary Clare was not so sure about the slide the first time…
Horse-drawn covered wagon ride
Cheese! ( I guess we should say, PEACH!)
Dressed for Success!
Potty Training Update: Mary Clare is trucking along with the potty training fairly well. (Mommy’s fault…Potty Training was not on our “Vacation To-Do list”.) Now that we will be home for a few weeks, I’m implementing potty training boot camp!
We know she is ready, now we are! She loves her potty and loves going, especially when McCanless, Mel and I do the potty dance and she gets a Skittle!
Mel and I decided to kick up the potty training a notch when we heard her screaming in the middle of the night, “Mommy, diaper wet. Mel, need a new one. Diaper. Mommy, I WET!! Change me! Mel, need a new one. Diaper!!” She usually wakes up with a dry diaper and we rush to the potty in the morning which can be a quick and early wake-up call for us, but I think its working! When we are home I let her wear her birthday suit, and as you can see, she finds ways to accessorize that too!
Fingers Crossed…
Mary Clare in her Big Girl Bed
McCanless spent the night with her friend Eliza this weekend, so I thought it was a perfect opportunity to try out the big girl bed rails that have been hanging out in the attic since McCanless mastered the art of big girl bed sleeping without falling out of bed. I swore that Mary Clare would be in her crib until she grew out of it, literally. (We made the mistake of taking McCanless out of the crib at 18 months and regret it nightly when we feel a five-year-old foot in our side or face-She has hardly made it a night alone, all night, in her own bed since we took her out of her crib.) Mary Clare, now, has begun to completely throw a fit when she even looks at her crib. She hates it. She loathes it. She cries until she throws up when she is in it….So, here we go again. Keep your fingers crossed!
Hot Hot Hot
Happy July 4th!! Mary Clare is napping under the umbrella, McCanless and Mel are floating in the ocean and I’m sitting in the sun playing with my new Iphone. Woodham family cookout tonight and fireworks on the beach! Life is perfect!
The After Party
As soon as Mary Clare awoke from her long (for once) post-party nap, she dug into her fabulous birthday presents!
…and what’s a birthday without a Mexican dinner?
…in Fancy Nancy costume, of course!
A Tutu Party for Mary Clare
We are too too excited! Mary Clare is turning two!
We are having a Tutu Party and inviting you!
You must wear a tutu, for plain clothes won’t do!
We’ll whirl and twirl and have birthday cake too!
P.S. We are tutu excited, and tickled pink too.
If a tutu is not for you, then pink will do!
The Tutu Cake almost didn’t make it to the party. The birthday girl decided to get a close look and try out a star to two!
Emerson, Mary Clare’s best heart friend, came to help celebrate, too!
Although we asked for and received many generous Annabelle Basket donations in lieu of birthday gifts, Mary Clare received tutu many fabulous gifts, too!
Happy 2nd Birthday to our little Sweetheart!
When you grow up living in the country, you learn to get creative with your surroundings. Without many neighbors, my sisters, brother and I had each other. For my poor brother that meant having to endure dressing-up, playing with girls and learning way too quickly how girls “operate.” We did, however, have THE most fun despite being 20 minutes from civilization and all of our friends.
Not many people can say that they have been “slung” behind a huge tractor on the top of a sandbox cover through snow filled streets with the entire neighborhood. All five of us. My granddad had a convenience store just around the corner which meant orange push-ups and fried “tator wedges” at any time of day for us! We had picnics in the fields and could whip up our very own water park with just a few kiddie pools, the water hose and our sliding board and sandbox. My sister, Kacy has such a huge heart for animals and was always trying to save an animal or two or three of some sort. To this day, I’m not sure if mom really wasn’t aware of all of the animals she tried to hide upstairs in her room or she just ignored it. We hatched eggs, got bucked off of horses, painted rocks, slid down the hardwood staircase in plastic orange sleds, made up dances and plays and performed them for huge audiences of three for small admission prices of course, dressed up Alston, roller skated on our wet soapy driveway, and got into so much trouble!
Although my girls are growing up in the “city limits,” I”m thrilled that they still experience a bit of what I did as a child. When my sisters, brother and I get together out at mom’s, it is as if we never grew up. Now, we all play freeze tag in the yard, Mom takes the girls on adventures “hunting” pecans (we finally realized what she was doing), they go on candy shopping sprees at “Pa’s store”, we gather yard sticks for sundown fire pits and mostly, we laugh. Some things never change.
Pennington Beach Week 2009
The entire Pennington Crew loaded up and hit the beach last week.
Under the tent…Aunt Michael, Uncle Michael, (nope, not a typo) Aunt Liz, PaPa, McCanless, Robert, Me, Mel, BB, Reese and a napping Mary Clare
Nothing cuter than cousin hineys in an outdoor shower!
Boat rides with Uncle Michael
Beach Yoga with Papa
A sandy peanut butter sandwich in a pail!
Sweet Reese
…and yes, there were a few moments like this.
To which Mary Clare just rolled her eyes…
Looking at the alligators in Georgetown with BB.
Mary Clare’s first water slide!
Beach Bums
McCanless and Mel at the “Princess Breakfast Palace”. (As soon as we walked into this perfectly pink interior Pancake House, Mary Clare grew wide-eyed and proclaimed it the Princess Palace. She thinks anything pink is for princesses.)
Thanks Papa and BB for a wonderful time at the beach!
MUSC Cardiology Visit
Yay! Mary Clare had a great check-up yesterday with Dr. Forbus, her cardiologist at MUSC. I was a bit nervous aobut the echo and EKG because it has been a while, and well, she is two and is completely acting like it these days. First and foremost, her heart function looked great! Whew! Can you believe it has been a year since her last echo? (I didn’t realize that and couldn’t believe it!) Her EKG also looked great! She sat very quietly through both the echo and EKG! (I couldn’t believe that either.) If you have ever had either you know what I mean. She has to have about 15 “stickers” and wires placed on her chest and sit still and quiet for a few minutes (consecutive minutes) before a good reading, and it took no time for Miss Mary Clare. Her echo went just as well. She jumped up on the table in the dark room, allowed the ulrasound tech to apply jelly and “take pictures” for quite a while. I was completely amazed. I’ve never seen Mary Clare so content and quiet.
She charmed all of the nurses and doctors, as usual, and was a complete doll for her entire three hour visit. She is up to 23 lbs and her O2 saturation levels were in the upper 80’s! BP also looked great. A “little blue,” but that seems to be typical for Mary Clare. (Although, it was a bit difficult to read her fingernail color, as they typically do to get a good color check. Mary Clare’s nail color just happened to be Double Decker Red, thanks to Aunt Kate.)
Since her heart function looks great, all we do now is wait. She needs to be about 30 pounds for her next surgery, the Fontan, unless her oxygen levels begin to drop, in which case, they will operate sooner. Her next appointment isn’t until December. She will have another echo, EKG and blood work to check her blood gas levels. What a relief to know that she is as healthy on the inside as she seems to be on the outside! Now Mary Clare and I can focus on more important matters, like a Tutu for 2 birthday party this weekend! We have plenty of pink princess tutu’s and sparkle rice krispy treat wands to make!
This mess in my house…
was not made by the kids in my house.
Rather, the funeral director-by-day/creative entrepreneur/web designer/photographer extraordinaire-by-night in my house, otherwise known as my hubby, Mel, who just happens to be running for Mayor of Hartsville.
Have I mentioned that?
Mary Clare thought it was fantastic to have a photography studio in our dining room this weekend…
to show off her brand new pink sparkle shoes.
Meet the Bailes (Tygh) and Pennington (Mel) of Pennington & Bailes Clothing Company.
and their tiniest mascot, Mary Clare.
“We have a limo. Do you want to take the limo the movies tonight?”
“You really have a limo?”
“Yes, my dad keeps it at the funeral home.”
is what I overheard McCanless discussing with her friends, Jennie and Eliza tonight as they were getting all dolled up for their movie date with Mel. Tonight is a milestone for our little girl. It is her first big girl sleepover. It marks the first of many, many sleepless slumber play dates, I’m sure. This was all Mel’s fault idea, as he adores Jennie and Eliza and has been hyping up these girls for months for a sleepover at our house! (McCanless has stayed with them several times, so I guess it is all fair play.) He was just as thrilled as they were, however. As I sit here in the momentary peace and quiet as Mary Clare sleeps and I await their arrival from the movies, I wonder if Jennie and Eliza will make it through their first overnighter, if there will be a quarrel, if I can get them to bed at a decent hour, if Mel actually went to get the funeral home limo to ride 1/2 mile downtown to the movie theater? But mostly, I wonder where the years have gone? Is she really at this age? Five and a HALF she is always sure to tell anyone who asks. Time certainly flies. If only tonight would.
Prestwood Pool
With summer comes
daily scrub downs in midday bubble baths
in attempts to remove caked on sun block after
ice cream sundae parties on Fun Filled Fridays, and noticing
new freckles, pink noses, and white hineys.
This is about all that I see of McCanless once we hit the pool gate. This year is even easier because I feel comfortable with her in the “big girl pool” alone, well, with her entourage of pals and the constant watch of the lifeguard, as I play with Mary Clare in the baby pool. She completely wears herself out playing Marco Polo, and “Pom Pom” in the deep end for hours!
As does this one splashing and bouncing around in the Baby Pool with all of her baby pals. Rarely does she make it all the way home without falling asleep on our golf cart ride, which is about three minutes. Too bad that is about as long as she sleeps!
I spoke too soon…
This morning, as I slowly woke and I realized that my dear hubby had placed our daughter in the bed between me and our other daughter in the wee hours without my awareness, I heard the following… “Mommy, wake up. Mommy, get up. Mommy, I need juice. I need it. Juice. I can go, too. Move. Mommy, get up. I need it. Juice. Here it dis. Cup. I can go, too. Help!! Mommy, get up. Hold me, Mommy. Push wegs.” (As she attempted to push my legs off of the bed.) When I finally was able to open my eyes, I realized that it was my sweet almost two-year-old. The same two year old whose verbal skills I was just a bit conerned about several months ago.
Enjoying the moments
A couple of months ago I began a post, kept it in my draft file and deleted it after a week or so. The post began “I’m back to that place again.” It was another venting session that allowed me to let go of some of that anxiety I had been facing about Mary Clare’s upcoming surgery.
With her second birthday approaching, the realization of another open heart surgery overwhelms me. Occasionally, I sit at my computer late at night and research, read, and cry all over again. It has been a while . I would even dare to say that within the previous year there were many days that her little half-heart didn’t cross my mind. Lately, however, I’ve been feeling exactly like I did when I was pregnant with her. Scared. Over the past two years, I have spoken to so many other heart moms; other scared moms who only want to hear answers, grasping for support, seeking encouragement, and I find myself trying desperately to listen to my own advice as I, myself, am right back to that place again. I loved Mary Clare with every ounce of my being before she was born and it was excruciatingly difficult knowing she was inside of me, perfect and healthy, but would endure so much once she was born. Again, she seems so perfect and healthy and I know that I must let it all go and pray that God will return her safely to me. Letting go and loss of control is a bit difficult for me, anyone would tell you. It is especially difficult now when I can close my eyes and see her sweet, chubby cheeks, mass of messy, yellow curls and hear her tiny two-year-old voice saying, “Wov You, Mommy.”
We have an appointment on June 24 at MUSC, three days before my sweet Mary Clare turns two. We were told in the beginning that she would have her third surgery between the ages of 3-5. The time is quickly approaching, as the past 18 months and three days since her last surgery have seemed to fly by. People tell me often that they don’t know how we do it. How we face knowing that our baby lives her life with only half of a heart. Honestly, I don’t know how we do it either. I’m humbled when I stop and realize that we do in fact have her here with us when so many other heart babies now dance in heaven. I’m certainly no hero. Mary Clare is the one who endures so much. Seeing her is all that I need to continue on. She is my miracle and everyday, however difficult at times, we continue on and strive to just let go and enjoy every single moment.
Bapa’s Birthday on Hilton Head Island
Last week was Bapa’s birthday, so we packed up and hit the road to Hilton Head Island! Aunt Liz, Aunt Casey, and cousins, Molly and Will also visited! We had a house full and so much fun!
Molly and McCanless are 7 months apart and adore each other.
Pete…
Repeat!
Happy Birthday, Bapa!
After Bapa’s birthday fiesta, we headed to Harbour Town on the trolly to see Gregg Russell.
Mary Clare wanted a closer look at Mr. Gregg.
The girls had the best time together!
Look who found Mimi’s sprinkle stash! After eating most of the bottle of sprinkles, she dumped the remainder on the rug in the den.
A tub full of cousins!
Sweet William
The girls making shell necklaces with Aunt Casey.
If you haven’t noticed before now, this is Mary Clare’s “cheese face.” As soon as she sees my camera, this is the face I get.
This was taken just before we left. It is always so hard to say goodbye!
More S’mores!
We aren’t quite the Swiss Family Robinson and have never once been camping. Although we have tossed around the idea of pitching a tent in the front yard, it hasn’t happend yet. I certainly don’t want to deprive my children of sweet summer camping treats, so we improvised! S’mores on the gas top, anyone?
The one benefit…
of having to listen to every Hannah Montana CD 27-7 for the past year or so finally surfaced last night. The girls and I closed the pool down yesterday afternoon, came home showered together and headed out to a late night dinner minus Daddy, who had a late meeting. It was just getting dark, our bellies were full, and we were exhausted from our “busy” day. We rolled down the windows to feel the warm summer night air on the way home. McCanless, of course, requested the music to be turned up LOUDLY, and for once didn’t mind that it was on “Mommy’s music.” I laughed as I realized that we were both singing loudly every single word to Girls Just Wanna Have Fun, while Mary Clare tried her best to sing along with us. I loved the moment. I loved being with my girls. I loved the feeling of summer. And I really loved that my five-year-old knew every word to one of the greatest songs ever written, thanks to a Hannah Montana re-make.
Happy Memorial Day (after)
We had a beautiful long weekend at the beach with Nonnie and Kate and made it home just in time for a cookout at BB and PaPa’s house yesterday afternoon. Summer has officially begun. The girls’ sun kisses faces and bare feet stay dirty. We play hard and sleep late. No schedules, no bed times, no alarm clocks. The only thing on our calendar for this week is pizza night. Life is fantastic!
We always want what we don’t have!
McCanless wants curly hair so badly! She is convinced that her friend Anne Dubose, who stays only half day at school, leaves early so her mom can curl her hair. She has begged me for months to curl her hair so it will be “just like Anne Dubose’s.” I’ve tried a a curling brush, curling iron and even thought about trying curling shampoo. Last week, we took a trip to Sally’s Beauty Supply Store and I found what I thought would do the trick, sponge rollers! I don’t remember my grandmother having black curlers, only pink, but I was sure they would work, nonetheless! We washed her hair and rolled it up tight. She was a bit concerned about the rollers falling out during the night, but surprisingly most didn’t. Daddy laughed hysterically when he came home late that night when he saw our “Sleeping Beauty” in all her glory with a halo of black curlers.
Poor thing, it completely flopped the next morning. Thanks for nothing, Sally!
Little copy cat HAD to have “RO-WERS” in her hair, too!
They’re pink, right? That matches!
Last Sunday, after dressing Mary Clare, I told her we only had to put on her “Sunday Shoes” and she would be ready to go! I left her to play and moments later, as I was dressing myself, I heard loud knocks and thuds coming from the playroom. I waited for cries and heard nothing, so I continued on. (If no one screams, usually all is well.) Then I noticed McCanless and Mary Clare laughing/clomping/sliding/falling/SKATING down the hallway! Apparently, Mary Clare considers skates to be proper “Sunday shoes.”
School’s out for SUMMER!
Tonight on the way home from our celebration dinner, McCanless asked me what she would do tomorrow, now that school is over. After I told her that she could sleep in and do whatever she wants to do, she got wide-eyed, smiled and grew extremely quiet. I could tell she was contemplating the very idea. “But Mommy, what WILL I DO?” She can’t quite grasp it! Little does she know I’ve got plenty up my sleeve…cheer camp, investigation camp, bible school, dance camp, swim lessons, maybe tennis lessons, soccer camp, etc., etc., etc.
First Day of 4K-August 2008
Last Day of 4K-May 2009
McCanless and Eliza signing yearbooks.
McCanless will certainly miss Ms. Chure next year!!
McCanless requested Miyami’s Japanese Restaurant to celebrate her fabulous 4K year! I guess this makes it official…It’s summer!
The tiniest “K-er” in the house, Mary Clare will begin 2K in the fall!
Lions and Tigers and Butterflies…
The THA Spring Musical had a jungle theme this year. After weeks of discussing what McCanless should be, we narrowed it down to a butterfly, a peacock or a fairy. I figured that the butterfly was probably the closest we would get to a true jungle animal; so butterfly it was! (Luckily, there were other girls who felt the same about those jungle animal costumes, so McCanless wasn’t the only butterfly!)
My little Monarch and her pal, Eliza, the colorful butterfly!
A portrait of me for Mother’s Day!!
My Little Mermaids…
Just a few photos from Mother’s Day weekend that I had to post! Mary Clare loved being in the sand!
Try this one…
THe DoFin
Is inthe WODR
JUPeG
THe DoFin THE ED
BY Mccanless MLP 4K (Name in cursive with curls and dots, of course.)
I have a slight advantage. It didn’t take me long to decipher this story with the drawing. See if you can figure it out!
Thanks, P
I was thrilled to receive the Mommy Movie for Mother ‘s Day from Mel! Nothing could have made my Mother’s Day more special. Many have asked, so… Yes, Mel did create it and write it himself. And no, it doesnt’ seem to be working in Internet Explorer. I’m hoping that by adding this post, you’ll be able to at least open babypennington.com again! (Wouldn’t want to deprive you forever of my precious babies.)
Mommy
You are the love of my life. Thank you for all that you do. -P
The video was giving so many people problems (including me at school), that I decided to take it down. I think it must have something to do with computers that block certain devices and or material. (i.e. video/photos) You can still click on the link below, however! Sorry P!
Mommy from Mel Pennington on Vimeo.
Of all of the thousands of people that happened to be at the beach this weekend, Mother’s Day Weekend,
and of all of those who decided to go to Target on a Saturday night,
and of all of those who happened to be walking by the shoe section in Target, while my sister, Kate chased Mary Clare up and down the isles because Mary Clare thought the clicking of her brand new jelly shoes sounded fun as she ran as fast as she could on the hard floors of Target,
there was one person who just happened to know.
She first recognized Kate. As Mary Clare ran by, she was a mother that could also recognize a blueberry baby a mile away. She told her husband she had to wait outside of the dressing room, because she then recognized Mel as he waited for me. (Mel was in shorts and a T, so it was astonishing to him that she could do such a thing. Sometimes, even I don’t recognize him without his suit.)
As I came out of the dressing room, she began to cry. She knew me. She knew all about my blueberry baby because she too had a sweet blueberry baby. She has followed our story and watched Mary Clare grow. Her baby girl, Gracee, was born in 2006 at MUSC. She was thrown into the world of HLHS when she was 19 weeks pregnant with her baby girl, just like me. We had the same doctors, the same nurses. The same surgeon. My Mary Clare ran, laughing through the aisles of Target. But my new friend, Brandi wore a white and purple rubber bracelet with tiny wings bearing Gracee’s name. Gracee wasn’t with her. Gracee only lived to be 12 days old.
We immediately connected and began to discuss days in the hospital, medical staff we shared, heart moms we knew. She introduced me to her husband and her second baby girl who just had her 1st birthday last week. They were a beautiful family.
I am so thankful that we happened to drop into Target on a busy Saturday night at the beach. We were going to look at swim suits; Brandi needed aloe for sunburn. When I think back to all of the decisions that we made and changed and how the timing just had to be so perfect. I think that my new friendship isn’t quite by chance.
Today, Mother’s Day, I have a heavy heart as I think about my new friend and kindred spirit. I wish terribly that Brandi could have introduced Gracee to Mary Clare. That we could plan a play date with all four of our girls, not just three. I wish we could have scheduled a cardiologist visit on the same day to meet up in Charleston for lunch with our blueberry babies.
Thank you, Brandi for our new friendship and for telling me all about sweet Gracee. I will think of her often. Thank you for a precious reminder that today I should hug my girls a little tighter and relish in every single moment we share.
The THA blood drive was a success!
Hayley and Julia drove all the way from Columbia to donate blood! Wow, thanks so much girls!
I wish I could have gotten photos of everyone who donated! Thanks to you all!
It’s Manic May again…
Mimicking McMama (and her massive amounts of meticulously molded alliteration regarding motherhood), I’ll take a moment to marvel at my mayhem filled month of May…
With massively accumulating mounds of work, my maternal skills grow mundane. My Mac and MC munched on a meal of mediocre pizza, while mesmerized with Noggin. Most certainly not a common mealtime manifestation!
Breaking news…
Mel just announced that Brown Pennington Atkins Funeral home is the first funeral home in South Carolina to use Twitter to update obituary information. Mel just began this yesterday and already has a ton of people interested and 11 registered as of last night! BPA was also the first funeral home in SC to offer Memorial/ Tribute DVD’s to families several years ago. Way to go, Mel!
Click here to recieve BPA twitter updates! (FYI, Mom, Twitter is instant news via text to your cell phone. You won’t have to wait to check the BPA website! And, no Mom, I will not offer Twitter updates on the girls’ happenings!)
Doc’s
Mary Clare had her first Ruth’s hot dog this weekend, and as you can tell from the photo above, she thoroughly enjoyed it! If you know Hartsville, you know Ruth’s Drive-In, or Doc’s, as most Hartsvillians would say. Nothing fancy. Just hot dogs and hamburgers and many familiar faces. It has been around as long as I can remember. As Mel and I sat in the booth snapping photos, several patrons said they remember seeing the two of us at her age eating Doc’s dogs.
Mary Clare ate her entire hot dog with chili. McCanless ate two!
Check out the Mel’s Special in the photo below. (One of my hubby’s creations when he was on the Atkin’s Diet.) Ruth’s now has several signs advertising it, complete with a paper bow tie attached!
Mel even blogged about it on melpennington.com back in February. “Living in a town of 7,000 means that celebrity status comes in really unique ways. Mine came last week via Ruth’s Drive In and a very special culinary delight…”
Field Day at THA…
McCanless was so excited on the morning of field day. She practically woke up on her own. Practically. She and I didn’t even have one single arguement about clothes. Not one. (The brand new cherry swimsuit and matching cover-up probably helped. The girl loves new clothes.) I wish every day could be field day.
Okay, so take what you will from this. I popped into her classroom to get a few shots of McCanless with her pals. I said, “Okay guys, get together for a photo.” McCanless immediately threw her leg up in this pose. Mel says he is forcing soccer camp on her this summer.
McCanless, Anne Dubose, Stella
Second place in the Potato Sack race!
I didn’t get many shots of the slip and slide and splash stations because I was a bit side tracked. My 8th grade boys thought it would be fun to douse their fully clothed and dry teacher with trashcans full of water. I would fail them, but that would mean I’d have them again next year.
“TA-DA!”
Never mind the wrong foot shoes, sticky hair, one arm, inside out and backward bubble…she dressed herself!
Little Miss is obsessed with dressing herself these days. She is very opinionated about what she wants to wear and puts up a good fight if you at least suggest another option. (Sounds familiar….will it ever end?) She is pretty good at finding arm holes and can throw on a dress in no time. Shoes are always on the wrong foot, but she always pairs them correctly. The “Flick-Flocks” in the above photo are her latest obsession. Who would have known? Of all of the cute sandals and summer shoes I’ve bought her lately, a $1 pair of rubber flip flops are her favorite.
Does life get any better…
…than a girls weekend at the beach…
…making new friends for the summer…
….and eating sandy Cheetos?
A whole week at Mimi and BaPa’s!!!
The girls gardened, painted, shopped, beached, museumed, stayed up way too late, ate candy and chicken nuggets and macaroni all week, played in the mud, played on playgrounds, played with neighborhood kids, read lots of books in makeshift tents, lost paci’s, found paci’s, laughed hard, played hard and got lots and lots of Mimi and Bapa kisses!
Easter Sunday
Nothing like a green Peep for breakfast to jump start the day!
Mary Clare did not want big sister in the photo!
After church, we headed to Grandmother’s house for more candy, more eggs, and lots of family!!
NaNa, Aunt Liz and Mary Clare
Mel with NaNa
Mary Clare did NOT want to share the piano with Reese and McCanless
Later on we went to Nonnie’s for dinner and for the annual, yet dangerous, big kid money egg hunt!
More candy, more eggs, more family!!
William and Mary Clare
The hunt…
Mel piling on top of Kacy, Kate and Alston in a closet after one of them spotted an egg and all dove for it. It gets brutal.
McCanless has her very own egg hunt, a much less rowdy one.
MC in KC’s pink heels
WHEW!
We are here . We are well. Spring Break 2009 was fantastic! We are tired. I will post all about it when I finish unpacking my car and scraping Easter candy and chocolate from floorboards, carseats, dashboard, windows,etc.. (I had to give the girls something to keep them occupied for a four hour car trip to see Mimi and Bapa!)
The Heart Ball was a huge success!!
The 2009 Pee Dee Heart Ball was a huge success and I just have to say that I am so proud of both my sweet heart baby and my non-stop hubby! Mel was a co-chair of the ball this year, and it was one of the best I’ve been to. (Of course, I may be a bit biased!) Mimi and Bapa and Nonnie and Bubba also joined us for a very special night.
Daddy looking dapper at a little pre-Heart Ball gathering we hosted at the Midnight Rooster here in Hartsville.
Nonnie took this just after a video of Mary Clare was played on three huge screens in the ball room.
The band was blasting, so of course, Mary Clare hit the dance floor! After the live auction, the open gift bidding began…it didn’t take long for her to steal the hearts of the entire room…and raise lots of $$!
Everyone wanted to dance with Mary Clare, even total strangers fell in love with her! (above)
Mary Clare danced the night away and helped raise more money than the American Heart Association has ever raised at the Pee Dee Heart Ball!! She didn’t slow down the entire night! (82 oxygen saturation levels..so what?!) We didn’t make it home until 11:30 p.m., and she didn’t even fall asleep on the car ride home! She had so much fun! We are so very proud of her and love showing her off! She is certainly our little heart miracle!
Here comes Peter Cottontail…
Virginia Anne invited us to her annual egg hunt again this year, which means kids, cupcakes and colored eggs galore! As usual, McCanless wasn’t the least bit interested in egg hunting, so we came home egg-less, but we had a great time! Now we are ready for the Easter Bunny to visit this weekend!
Anne Frances and Mary Clare are best buds!
Reese, Mary Clare, Carver, McCanless, Anne Frances and Katie
There were a ton of kiddos at the egg hunt, however, this is the crew that followed big kid, McCanless, to the front yard to hang out around the front door.
Sweet Reese, always hugging and loving on Mary Clare!
Quiz for the day…
Last Thursday after Mel left for Atlanta, I found a drawing to him from McCanless on the rug in front of the door. The outside cover read…
Plezgedit PlezOpn Doown
On the inside, McCanless had drawn an elaborate orange and pink landscape with a hill, half sun and grass. (A sunset, she later explained to me.) It read…
SuneDa 200 in 9 DAD
I (heart) U
McCanless (In her signature dot letters)
Figure that one out! I got it rather quickly. It took Mel a while.
Translation…
Please get it. Please open. Down. (As in look down.)
Sunny Day 2009 Dad
I love you,
McCanless
He who forms the hearts of them all…
Take 8 minutes to watch and listen to this. So worth it!
