I can't explain in words how this feels. The anticipation of having to hand over my baby to be operated on. I've tried to prepare myself as much as I can. I've reached out to other parents of Cranio children to get support. I've read their stories and looked at their pics to get an idea of what to expect after her surgery and during the healing process. I still feel unprepared.
My Mom has been amazing!!! She's been right by my side. She's let there be silence when I haven't been strong enough to talk about it. She's been there when I've cried and needed to release the built up pressure. Felicity is her Granddaughter and she's feeling her own fears and having to watch her own Daughter go through this frightening time but has always validated my fears as a Mother and said "I can't imagine what you must be going through"... that really means a lot to me. I can't explain why but it does. My Dad has been amazing as well!!! He has been supporting my Mom and myself and loves his little Granddaughter.
We are blessed with an amazing collection of family and friends that have been praying, calling, sending text messages and emailing to check up on us throughout this journey. I can't find the words to express my gratitude.
Something all three of her doctors have said at least once along this journey is "its the bone not the brain". That is something that is so important to remember! She has no delays in growth or side effects. I'm so grateful she was diagnosed early and is getting surgery right away.
I decided to create this blog to tell Felicity's Cranio Journey in my own words. Let me be very clear here, she does have Craniosynostosis however it does NOT define her! She will always know what she had and know about her surgery, but this will thankfully not be something she has to live with or address on a daily basis.
I also want to share her journey to bring awareness. I've had a few people say to me "I've never heard of it before" as to which I reply "well, neither had I until she was diagnosed". Since being diagnosed, I know of two other children that have had the same condition and surgery (one is a friend of a friend and one is a relative of my Dad's friend). It's not that uncommon, it's just not that talked about. I mentioned to her doctor that I thought it was odd more people don't talk about it and he said it was because once it's found it gets fixed and life goes on. I like that!
