Our journey started when our son was two days old. Lucas was born with a cleft lip and palate, noticeable facial palsy, hearing problems, and deformed ears; all unknown during pregnancy. At a couple hours old, he was transferred to the closest children’s hospital. Two days in our PICU doctor explained the possibility of CHARGE syndrome due to all the characteristics noted. Did I freak out as soon as I heard syndrome? Yes, yes I did! And I did exactly what the doctor told me not to – Googled it! And as much as I read, I couldn’t help myself and imagine the worst! But he’s good! Overall thriving and getting better each day! It’s not as scary at it might seem. I know doing research and advocating all I can is what makes him the little kid he is.
Is it scary? Yes! Is it complicated? Yes. Is it hard to wake up everyday thinking “what is gonna go wrong today”? Yes. But all those yeses are also a big NO! Are you the only one? No. Are you doing this alone, even if it feels like it? No. Is it easy? No. Is it impossible? No! There are a lot of resources to help with anything and everything.
