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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 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.