I remember that bitter sweet day in October. It was my 25th birthday, and you were 2 days old 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 fathers hand tighter than I ever have. They diagnosed you with a Cornelia de Lange Syndrome and prepared us for all of the things you would “never” do. Selling you so short.
We received apology after apology for your diagnosis with barely any congratulations or sign of excitement that the child we had so anxiously waited to meet, was here.
As thorough as many of these genetic doctors were, they left out so many important pieces of information- everything you WOULD do.
They didn’t tell me that your smile would light up the darkest of days. They didn’t tell me that you would make me a better person and give new meaning to our life.
They didn’t tell me that you would teach me patience, and perseverance , and even more unconditional love I already though was God given to me.
They didn’t tell me about all of the knowledge I would acquire caring for you.
Your body may not be able to fully physically speak as you grow- but your spirit, your soul, speaks loudly in so many other ways. CdLS will cause many challenges for you and your future. As much as I wish I could take away all the pain you’ve endured- the surgeries, infections, every “close call”. I wouldn’t change WHO you are. You are a miracle. You are a fighter. And you are ours.❤️
Beautiful little Sebastian!! My baby’s name is Kane- he has cdls. Just seeing Sebastian warms my heart as I remember our critical days. We just had his ptosis fixed with surgery almost two months ago, and I’m in love more and more every day with my little miracle. God bless you!