One of the upsides of social media is how you can connect with people in similar circumstances and struggles. We have gratefully met a handful of families locally who are also affected by Cri du chat syndrome on Facebook. (Pretty good for considering CDC is an incidence of 1 in 50,000 births.) Not only do we have Cri du chat in common, but we actually enjoy getting together. It’s not like we just tolerate each other because of our similar family circumstances. We share tips and tricks of raising a child with the same chromosomal disorder, but we have a growing friendship as well. That’s an extra heaping of grace right there.
This year we invited a few of Nathan’s Cri du chat friends who live nearby to help him celebrate his birthday. (Sadly, we missed the sMiles4Sammy run this year.) It was a simple BBQ with lots of dips for Nathan to eat–LOTS of dips for Nathan–and pudding in place of cake. We made it as Nathan food-friendly as possible.
This is the first year that Nathan understood the concept of gifts. He signed “open” repeatedly and actually took the tissue paper and toys out of the gift bags.
Nathan now loves it when we sing “Happy Birthday.” (I have a feeling I’ll be singing it year around.) It’s so fun to see his smiles and laughter as this year he recognized it was a celebration of him.
I fuss a lot about how slow Nathan is to meet milestones and accomplish things I wish he’d gotten by now. Like clapping, for the love! However, I’m convicted that it’s not so much a problem with Nathan, but a problem with me. Me not accepting his timeline, and for some things, accepting that he may never meet the goals I either intentionally, or unintentionally, have for him.
Each birthday I feel like I have an overall theme of the year behind us. The first year was celebrating that Nathan was alive and still with us. The second year was celebrating that we successfully managed his growing list of medical complications. The third year was celebrating Nathan for Nathan–for who he is. This fourth year is about celebrating his gains, whether big or small. There have been many.
This year he went to school, he started eating little amounts of food more consistently, he’s using his walker at church and therapy, he added some word approximations to his small vocabulary, he’s acknowledging his environment and the people around him more, and most endearing, is his personality is starting to blossom.
Same as last year and the year before that, Nathan we are glad God made you. We are glad you’re here.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!