Today is Huey’s 6th Cranioversary! I don’t know why this one feels extra sentimental to me for some reason. To be honest, I was a mess from the time we received his diagnosis up until like 3pm on this day 6 years ago when his surgeons paged us and told us surgery was a success and we could head up to his room to see him after nearly 7 hours in the OR.
I don’t remember this because the first 6 months of his life was a blur with appointments and procedures and oh yeah, caring for a toddler and a newborn, but Matt remembers coming home from work and I would be sitting in the dark, with all the shades closed (if you know me, you know how out of character that is, haha). Needless to say, I was so overcome with grief and anxiety and fear that some days, I couldn’t and didn’t even want to think about being at this point because the unknowns of it all scared me too much. Would he even make it to 6 years old? Would he be able to do things “normal” 6 year olds do? Would life be harder for him because of this?
I’m happy to say that life has been so incredibly kind to us in our post-operative journey and there’s not a day that goes by that I do not thank our lucky stars for Huey’s pediatrician, Huey’s surgical team and Huey’s continued good health. 6 years ago, I couldn’t imagine feeling anything other than angry and afraid. Today, I feel nothing but gratefulness and optimism for Huey’s bright, bright future.
To Dr. Brenner (Huey’s pediatrician who listened to and validated my concerns and didn’t make me wait to see a specialist when I told her I didn’t feel good about Huey’s head shortly after he was born); Dr. Buchman (Huey’s plastic surgeon with a great sense of humor, when needed most); and Dr. Muraszko (Huey’s neurosurgeon who helped me find my voice in the hospital with our care team): you are angels among us. Thank you for taking such good care of our boy. We are forever indebted to you.
To our brave, kind, hilarious, cheeseburger-loving math whiz: Happy 6th Cranioversary Hueypotamus!! We are so so SO proud of you and love you SOOOO much!
You can read more about Huey’s journey with craniosynostosis here.
Support families of children navigating a craniosynostosis diagnosis and upcoming surgery here.
Music copyright credit: Christina Perri – A Thousand Years
