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.
11 Comments
Erica May on January 22nd, 2011
Kerri,
You guys are always in our thoughts and prayers! I know all to well how it is to “wait” on the Fontan! And here we are almost 5 months after, still dealing with the fluid 🙁 You will find strength in your faith, family and friends and in your baby girl who will surprise you with her strength! No, it won’t be easy, but we know we have to do this for our girls and once it is all over, hopefully will be their last surgery!!
These girls are so strong and God has big plans for them!! I can’t wait to celebrate their 4th birthday’s this summer! I am here if you need anything! I hate this road we have to take, but so glad we have you guys to take it with!!
love,
Erica
Andrea on January 22nd, 2011
I feel every ounce of emotion as you do. I keep thinking…prepare..it’s all I can do. One surgery in2 weeks and I pray that the font an will be an option for Owen. Mary clare is amazing! she will push through the fontan with her spunky attitude.
Hugs to you as you prepare. I am with you…princess this summer sounds perfect! We promised Mickey and buzz in the fall…let’s just get through these surgeries!
It has tobe done.
Shannon Carter on January 22nd, 2011
Oh, you have me in tears!
I’ve read about your sweet Mary Claire for quite some time, but I’m not sure I’ve ever commented. Our son, Derrick, is in waiting…he’s almost 2, so not nearly as close to time as Mary Claire, but I dread it none the less.
We’ll be praying for your heart as you prepare. And of course we’ll be praying for your sweet girl!
Judy Brown on January 22nd, 2011
Dear Kerri,
It would be a lie to tell you I know how you feel. I have never experienced anything even
close to what you are going through. I will tell you, though, that I have an idea how you felt when she had that seizure. I worked in a hospital many, many years and saw a lot and got used to a lot of things that I thought I would ever get used to. However seeing someone in the throes of a siezure was the one thing I NEVER got used to. It was the scariest and most helpless feeling I had ever had in my years there. I knew in my head that patients hardly ever die of a seizure, especially children having a febrile seizure, but that idea never reached my heart. I hope you never have to experience that again. Walter and I continue to keep Mary Clare and all
of you in our prayers and will rejoice with you
when all of the surgery and recuperation is over.
God bless each and every one of you. You are all so loved by all of us and most of all by our Lord
and Saviour, Jesus Christ, son of God. He will be with you each step of the way. Hold on to Him and trust in His mercy.
Love,
Judy
Betsy on January 23rd, 2011
Oh Kerri! How I wish I had words to make it all better – just as I did the day you found out about Mary Clare’s heart. 🙁 You have made it so far already and I know you’ll be so relieved once she gets past this last hurdle. I love you and wish I could spend more time with you and that spunky little blonde of yours! (who by the way is starting to look more like her big sis in the pictures I’ve seen lately)
Kacy on January 23rd, 2011
As grown-ups, and you her mother, we can’t help but worry about our sweet Mary Clare and the road she has ahead of her. We all want the best for her and try to create an environment that will keep her safe and well. Although we try our best, we can’t protect her from everything and we worry. The funny thing about Mary Clare is she doesn’t worry. Even after her seizure and terrifying morning, she was ready for better things like ice cream, board games, and the fabulous Barbie kite. All of us had our eyes glued to her, making sure nothing else would happen. Mary Clare however, was glued to her kite! Nothing in the world was going to stop her from flying that kite; not even a little seizure! She walked around all afternoon and night with the kite in hand! She asked and asked and asked if we could fly it! We wanted to take her to fly the kite, but we didn’t want to make her cold worse and bring on more seizures by taking her out in the cold air. We were going to do what we thought was best for MC. Little did we know, the one thing in the world that would make her happy and feel better would be that kite. Mary Clare did not give up! She was going to get what she wanted. Then without warning, you swept her up, took her out to the driveway, and ran! You ran up and down the driveway, Mary Clare in your arms and the kite following behind. The strongest laughter belted out of her weak body! She felt better and Kerri, you made it possible! You’re her hero! The run down the driveway with her mommy made her day and filled her bucket. Have You Filled a Bucket Today? is a children’s book about an invisible bucket everyone carries. When people do things to make you happy or show they love you, it fills your bucket and makes you happy no matter what! This book makes me think of Mary Clare. Her bucket overflows constantly! At times when her body is sick and helpless you make her feel better with the love and happiness you give her! We may not be able to fill her heart and make it whole again, but we can keep her bucket full with love and things that make her happy! Sometimes at the end of a long day, all we really need is a run down the driveway with our hero to make the bad simply float away!
Kerri, you are the very best mother in the world! Mary Clare will always remember the things you do that make her bucket overflow; a run down the driveway, juice in the middle of the night, or a trip to Disney World, it all works for MC! Her mommy makes her feel better even if her body does not and that IS what’s best for her! I love you Big Sis and I still hope to be just like you when I grow up!
Sherrill AKA Sissy on January 23rd, 2011
I’m far away in body but nearby with my heart….I love all my nieces, nephews, great niece and our sweet Mary Clare – My “almost” children…love you all!
Sherrill AKA Sissy on January 23rd, 2011
one more thing – the princes at Disney only live a short drive from my house – come ANTME and we can visit them…. love, Sissy
TerriWoodham on January 24th, 2011
What can I say…I am a mother that feels your every emotion…pain,happiness and your love. I understand because I love you as you love McCanless and Mary Clare.
Mary Clare is a very determined and strong-willed little girl…just like her mother.
The seizure was a terrible experience. I will never forget the helplessness I felt. I couldn’t help my child or my grandchild. I kept asking God to please help…and He did.
I’m not ready for Mary Clare to have her last surgery, but it’s something we all knew would someday come. I don’t think I’ll ever be ready. But as you say, we must prepare ourselves and look forward to the summer…a summer where two little girls can be princesses at Kacy’s wedding, we can take naps on the beach, eat hotdogs at Sam’s Corner, take rides on the golfcart with as many Woodham’s that can fit, like clowns in a circus, make cupcakes in the middle of the night, and watch Kacy spray the people in the 4th of July parade with her giant watergun…and no more surgery for Mary Clare.
I am here…for whatever reason you may need me. You have so many friends and family that love and support you, Mel, McCanless and Mary Clare, don’t ever feel alone. We are ALL here.
I love you, MOM
Katie McKorell Liddle on January 25th, 2011
Kerri, you are without a doubt the strongest woman/mother I know!!! Those sobbing moments you’ve had aren’t a sign of weakness… I don’t think you have an ounce of weakness in you. You’ve had challenges as a mother that most of us will never face… you just amaze me!!! My heart breaks to imagine what you felt during Mary Clare’s seizure and what March brings. I pray for the quick arrival of summer, too!!! I already envision two little girls running around the Magic Kingdom in their best princess attire.
Love, Katie McKorell Liddle
Happy Heart on January 22nd, 2011
Praying for you as you get prepared. Oh, how we love our babies! How deep our love is for them and when they hurt, we feel their pain.
God is with you and will walk with you each step of the way 🙂