I felt like I was going crazy. Like my world was falling apart. I know that i’m not alone but it’s hard to find someone else who understands. My son was born with what I considered an “odd shaped head”. The nurse told me it was “birth head”. But this was my 4th child. I know birth head and this wasn’t it. His face looked a little crooked. He always looked like he was winking a bit. Five months later, after bringing it up at every well baby visit we finally got a referral to a craniofacial clinic. That’s when my world started to fall apart. CRANIO-WHAT? I never heard of this. Craniosynostosis. Such a long word and a scary diagnosis to put on my little baby. I felt isolated and desperate after learning about the diagnosis. I came home and quickly did an internet search. The photos and stories scared me half to death. BUT I found peace. I found others. I am no longer alone.
I am so thankful that I found cappskids.org and connected with so many families. My son is about 45 days away from his surgery and I can’t wait to be on the other side.
I was not crazy after all. I was right! Because I am mom and my son is a warrior.