The memories from that beautiful day in October are sometimes too intense to relive. You were two days old and it was my 25th birthday when the genetic doctors came to us and gave us your suspected diagnosis. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
I sat there in shock, staring at them angrily as I fought back many tears and held your father’s hand tighter than I ever have. I was so angry that life might be different for you. They diagnosed all 3 pounds of you with a Cornelia de Lange Syndrome. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
We had no idea that we would spend the next 101 days in the ICU and Pediatric Surgical Heart Unit, watching a ventilator breathe for you for the majority of your days. Watching you undergo two heart surgeries and losing you briefly, once, during our stay
Cornelia de Lange
