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.

16 Comments

Jenny  on June 15th, 2010

I have tears in my eyes after reading this post. I know exactly how you feel. My daughter is one (in two weeks) and at the hospital she is treated at they do the Fontan by 24 months so it will be coming sooner than later for us. I just wrote a post very similar about my baby girl. Praying for your family and keeping you in our thoughts.
Heart hugs,
Jenny (mom to Aly- HLHS)

bmarchant  on June 15th, 2010

Oh Kerri…my heart breaks for you! I will never know how it feels or exactly what to say, but I am always sending lots of love and prayers your way. And watching in awe as you handle what I’m not sure that I could and still live life to the fullest.

Mary Clare will grow up to love and respect every medical decision you’ve made for her because, simply, it saved her life. I believe it’ll be the days she spends with you laughing, riding rides, playing on the beach, and eating fudge that she remembers forever, not the ones at MUSC.

kacy  on June 15th, 2010

I’m going to be there as much as I can! I’ll try to think of something more fun to do than making peanut jelly sandwiches!

Sissy - aka Sherrill  on June 15th, 2010

Mary Clare will have the brightest future – she is going through all this with the strength of her mom & dad and her strength – there is a wonderful reason she is here – can’t wait for the future and a grown up Mary Clare……

kacy  on June 15th, 2010

Those days spent in the hospital will be hard, I may never know that true meaning of “hard,” but I also agree that Mary Clare will remember the long summer days of fun, rather than those spent at MUSC. However, if she does remember the MUSC days, she will remember Daddy painting her toes a different color each day and her Mama there to comfort her and tell her everything is going to be okay. She will also remember all the great people that came to see her and made her laugh. As soon as Mary Clare gets out, she will be getting super excited about Disney World and Santa Clause coming to town in the months to come. She may not think twice about what she just went through. The best thing about Mary Clare is she’s a strong little princess. She bounces back so quickly; laughing, dancing, and keeping up with her big sister as if nothing has happened! You and Mel have been the VERY best parents MC could ever have!! I’m not sure what God’s plan is, but I know he knew what he was doing by making the two of you Mary Clare’s parents. I only hope that one day I am 1/2 the parent the two of y’all have been to both of your girls!! When the time comes we will get as prepared as we possibly can with prayers, love from friends and family, and with faith that God will guide us safely through to a speedy recovery! Until then, bring on the waves, sandy beaches, the most beautiful princess dresses, golf cart rides around Hartsville and the beach, birthdays, everything “pinkalicious”, and all the things that make us laugh until we cry! The good always triumphs the bad; just like in a princess story! I’ll be seeing you soon to be a part of all the fun!! I love you so much!!

Andrea  on June 15th, 2010

Sounds like you are having a fantastic summer!! Enjoy every minute of it because it is disappearing (for us at least).

Surgery will be tough for all of you, but Mary Clare is going into the Fontan as a strong little girl. She is doing SO great!! I can’t help but think what it would be like if Owen were able to get his Fontan, we’d be going into surgery this fall as well.

I always think the same things. How to answer the questions. It’s getting harder as they get older. You’ll have lots of prayers and things will work out okay.

Continue to enjoy your summer!! It’s my favorite time of year because I have my kids all to myself! :)

KATE  on June 15th, 2010

MC is such a lucky little girls to have you and mel as parents.. you are both amazing people and i know that all will be well.. i love you all so very much and will be with you during this journey. kiss the chicks for me.. i miss them both so much!

ericamay  on June 15th, 2010

Kerri, I feel your pain!! I think about it everyday! Our girls are so strong and I know they will do well! I hope we are there together and that may help! We have also promised a trip to Disney after the Fontan, so maybe they can meet there too! I love you all and am so glad we have each other! We look forward to seeing you soon! Can you believe our girls will be 3?
love,
Erica
CarePages:EmersonBanksMay (HLHS)

Lee Wilkes  on June 15th, 2010

My heart is heavy and my eyes filled w/ tears for you. You guys are so amazing at how you handle all the stress of all you have to deal with. I simply cannot fathom what you are facing and I am sure that I would be a miserable basket case all the time. I am so proud to call you my friend because of the strength, courage, and most of all faith you show all the time.
You know I am always here to listen to you laugh, cry, or scream if you ever, ever need it. MC is such an absolute joy to all who know her. I don’t think she will ever think it is you that caused what is about to happen. She will only think that she wants the hugs and kisses of her mommy and daddy to make her feel better. I love you!!!
Lee

Mimi and Bapa  on June 15th, 2010

Kerri and Mel,
I am filled with tears, reading all that you express in your writing. You are always smiling like everything is fine, when I know your insides are churning. We will all be there for your family and will take care of McCanless in the process. You are so wonderful. What lucky children. We love you so! Mimi and Bapa

Misty  on June 16th, 2010

Of course, I am sitting here with tears streaming down my face. My heart just breaks for you thinking about what you and Mel go through and have gone through since the moment you found out about Mary Clare..your little heart baby.

I know that she will know that the decisions that were made by you and Mel were the best for her..the decisions that saved her life. I know that she will be forever grateful to you both and most importantly, she and McCanless will know how much they are loved by you two and SOOOO many other people. That sweet little baby girl is such an inspiration to so many people and she doesn’t even know it yet. And Kerri, you and Mel are such awesome parents and such a shining example of strength, love, courage, devotion and most of all, Faith.

Please know that I am ALWAYS here for you Kerri for whatever you need. I am so proud to call you my friend and I feel so Blessed that God placed you in my life so many years ago. Mary Clare and the entire family are in my prayers every single day and will continue to be. I love you!!!
Misty

Terri Woodham  on June 16th, 2010

I sit here and I’m so amazed of the wonderful person, my child has become. My heart goes out to you and Mel. Mary Clare will NEVER think you had anything to do with her surgery. She will be afraid, but just knowing her mommy and daddy will be with her to love and comfort her will make it better; and her big sister will be there to to make her laugh and share sister secrets.
I can’t stand to think of Mary Clare having surgery, but we know, it has to be. That’s what you have always reminded me. We must all lean of God’s love and support to get through this…but until the day comes, we WILL have the BEST summer; and after, we will ALL thank God and celebrate with cupcakes, chocolate, the beach, everything pink, Halloween, Thanksgiving, Christmas…just life!
I am so proud of you and Mel,and how our family comes together when someone is in pain or to share a special moment. It’s almost like we become one.
Mary Clare is a very determined little girl, she has that much of you in her. She may be down for a while, but she will be up and stronger than ever!
You and Mel will are never alone -you have your family,wonderful friends and half of Hartsville!
MC and Cannie are so lucky to have you and Mel…and so am I. I love you so. MOM/NONNIE

katie allred  on June 18th, 2010

Amen Kerri, to all that you said and your mother’s comment sounds so familiar to my mom’s words of advice…I will keep you close in my prayers for comfort and peace with her upcoming surgery. To put it bluntly, it just plain sucks…I feel your pain sister.

Can’t wait to see all of the fun you have this summer! Wished we lived closer, we’d join you!!!

Haunted Dreams « Adventures of a Funky Heart!  on June 23rd, 2010

[...] By Steve Here’s a blog post from a friend and a Heart Mom that you need to read: Last night as I watched Mary Clare zoom by me in her mini airplane laughing so hard tears were [...]

Julia  on June 23rd, 2010

I just found your site and have to say my heart is aching for you. My daughter had 2 open hearts as an infant, and in 2009 at age 3 had another open heart and then later a full sternotomy for a pacemaker placement. The difference in having to do this at age 3 instead of a baby was huge. I wasn’t prepared for it, for her questions, and for the first surgery I prepared really badly (like non at all!) I didn’t want to traumatize her by talking about it before hand, but looking back I should have prepared her more. We talked about it a lot before she went for the Pacemaker and it made a huge difference and went better. She didn’t even fight the breathing mask that time before they put her out. While each kid is different, my daughter not only has not held it against me, she doesn’t even hold it against the doctors. She still is so happy to see them for follow-ups! Feel free to email me if you would like. Otherwise I’ll keep you all in my prayers!
Julia

Tina  on June 23rd, 2010

Oh my goodness. I can so relate to how you feel. My son is 15 1/2 and it doesn’t get any easier for me. I try to help make even trips to the doctor fun. We have 100 miles each way to our cardiologist. He and I went Monday and I took him out to eat afterwards; I told him see you’re special, you get a trip to eat after the doctor while your younger brother and sister are at home. I said but it’s not really worth it is it? The teen that he is says” I don’t know that pizza really was good”. Then he corrects himself and says in a serious tone; no it’s really
not worth it but we do what we have to. Then we discuss
the possibility of his upcoming surgery and he says how soon will that be? I answered I don’t know and he says darn if I’m still a young teen I will get goodies; if I’m older I might not. You have to know him to know he’s just teasing, I playfully punched him and we dropped it. I have strived to give him a normal childhood but he has figured out that surgery means extra special treatment from all of us that love him. How can we not? Even at 15, Gray is still my baby. I wont paint his toenails, but when he has surgery you can bet he will get something to make it a little less icky, new music, a movie etc. We do what we do to for them and because it makes us feel better too. I love my heart kid! Many prayers for you and
yours. Tina

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