Craniosynostosis: The Scary Truth

Pictured above is my little 5 month old baby girl, Abigail Grace. Her name is fitting I think because Grace is something I believe God has given her an abundance of and he is about to give her a whole lot more. Abigail was born with a rare but very serious birth defect called, "Craniosynostosis". Craniosynostosis causes one or more sutures on a baby's head to close earlier than normal (which they normally fuse around age 2). The skull of an infant or young child is made up of bony plates that allow for growth of the skull. The borders at which these plates intersect are called, "sutures" or "suture lines". Abigail's skull plates have fused prematurely not allowing her brain room to grow. Because of this, Abigail will be having surgery done at Children's Mercy Hospital in Kansas City Missouri at the age of 9 months in the month of August. The surgeons told us that there are no other options to correct our poor little girl and that we must undergo this because if not, they informed us that our little Abigail would become mentally handicapped and severally mentally delayed as well as continue to become more and more deformed and uncomfortable. Of course, we have no choice... so surgery kind of chose us... I didn't really feel like we could choose. It all just happened. This is the scary truth of Craniosynostosis.

When Abigail was first born I didn't suspect any birth defect. She looked like a perfectly fine little 8 week old. Little did I know that just a few short months later, we would get the news that our perfectly fine little girl, wasn't so perfectly fine after all.

I get stares now. Just walking down the store the other day, a lady stared her down as I was carrying her outwards in the baby wrap with this look on her face like, "Hmm? I wonder what's wrong with that baby." I have seen other parents get that stare from other people if their children had some kind of, "defect" but to stand there and just take it as my daughter was being gawked at? I almost wanted to hide to protect my daughter from those kinds of stares. It felt uncomfortable. And very new. Not in a good way. I imagine I am going to have to get used to the gawking for a while. It's different when it's your own kids. It's hard for me to see anything wrong with her (or at least to want to). But there is no denying it... when I look in the mirror, I catch myself giving my own daughter that same stare. And I just catch myself and want to cry. But I don't care how deformed she might looked, or how not perfectly fine she is... she will always be beautiful to me.

As a Mom. the first couple times, you freak out when your baby gets that first cold, or that first REAL fall and skins not just one but BOTH knees. I don't know about you, but that is enough! That is quite enough and I don't like to have to see my children go through anymore pain or discomfort. Well, a a Mom with a child who has Craniosynostosis... that feeling is magnified to out of this world depths. I have had enough but it's too bad because I need to swallow that lump in my throat and breath deep... this is no cold or puny scrape on the knees. This is a life changer. Many times throughout this journey so far I have felt like God had pulled the ground right out from underneath me leaving me to feel like I was walking on air... not even a tightrope to help. Well, I guess that is what walking by faith feels like. I don't like it, but it's good for me. The road ahead is going to be a long one. A scary one. I am not sure how I am going to make it through this sometimes. But then I remember, Jeremiah 29:11 -the promise that God has given me for Abigail... I just put her name or, "her" in the place of, "YOU". It brings me comfort and a stronger hope and reassurance.

"I know the plans I have for Abigail plans to prosper her and not to harm her, plans to give her hope and a furture."

I don't know what the future holds for my baby Abigail. But God does. And that is enough to make me smile on those days I just don't want to.