Our Cranio Family: Craniosynostosis Awareness Month

Every 1 in 2,000 births a baby is born with Craniosynostosis. On September 21st, 2010 at 5:31 pm, my son became that one. In the moment he was born I couldn't have even imagined the road our lives would take over the next several months.

It became pretty clear, within the first 2 months of this life, that something didn't look right. I kept looking at his forehead, examining his head shape, and wondering why things looked the way they did. I would google everything and when I typed in "slanted forehead shape" one of the first things that popped up was Craniosynostosis. I had never even heard the word the before and I assure you I couldn't even come close to pronouncing it. I clicked on the link and read the signs of it and my heart sank. I knew right there, in that moment, my son had that condition. We took him back and forth to the pediatrician all the time and he kept saying it was just positional flattening and he would be fine. If it wasn't "better" by 9 months, we'd consider helmet therapy. I tried to listen to him and I would tell myself "he's the professional... he knows what he's doing..." but that feeling continued to eat away at me and I knew I couldn't just sit back and wait.

The day the Neurosurgeon picked up Owen and immediately said "right coronal cranio" it was like the air was sucked out of my lungs. I had been bracing myself for months to hear those words and in my heart, I knew that's what it was, but actually hearing those words - there's only one other time I was ever left breathless like that - and that's a moment in my life I wouldn't wish upon anyone.

In the days and weeks leading up to Owen's surgery I constantly kissed his sweet head and I would cry. I cried all the time. He was perfect to me, Craniosynostosis or not, I loved him no matter what. I knew the surgery was critical to his well-being and it needed to be done to ensure he would grow normally and live the life he was supposed to. But every time I kissed his sweet head, I prayed to take this condition away from him. Give it to me. Make ME have the surgery. Not him. I would've done anything in the world to fix this for him without him having to endure one ounce of pain.

I love all of my kids the same but each of them also hold a very special place in my heart. There are no words to describe the love I have for my kids. Owen is my hero. What he has gone through in his short life, he has done with a smile. Everyone I encountered in the time before his surgery would tell me how resilient kids are and how fast he would bounce back. I thought they were just being polite, saying comforting things to a person who they could tell was clearly a wreck.

They weren't lying.

That little boy kicked some serious Craniosynostosis butt.

I am not happy my son has this condition and I'll spend forever wondering "Why him?" Didn't God know I had already been through enough with the stillbirth of my daughter just two years ago? But one thing I will say is, while I am not happy, I am PROUD.

I ask you, or anyone else who comes across this blog, to take the time this month to spread the word about Craniosynostosis and early detection. If undiagnosed - my son would have eventually lost his hearing, maybe his vision and he definitely would have had developmental delays due to pressure on his skull.

My son is a warrior and he doesn't even know it yet. Some day I'll share his story with him and I will tell him how he showed more bravery and courage than anyone I've ever met.

He is my hero.