The moment selfie mode was discovered
October cannot slip by without showing you the moment Michael discovered selfie mode. It’s Down Syndrome Awareness Month, a time to celebrate individuals with Down Syndrome, promote inclusion, and raise public awareness.
I think that’s important. But, part of the awareness is remembering the parents who are just beginning this journey.
For those of you who just found out the baby you’re carrying will likely have Down Syndrome, or who just delivered a baby with DS and weren’t prepared for that diagnosis: you are not alone in the crushing weight of your fear. I felt that once, too.
Michael’s diagnosis came after he was born, and we were devastated. Afraid of what the future would hold, the possible suffering he would endure, and the radical shift he would bring to our family felt like too much. He is now 14 years old, and we have navigated nearly every medical issue associated with DS and I wouldn’t trade a single one of those days.
Has the road been hard at times? Yes, but hard days come with typical children, too.
Has Michael suffered? Some, because recovering from surgeries can be tough when he doesn’t fully understand why his body hurts or why he can’t jump on his trampoline after surgery.
Has his life impacted our family? Yes, dramatically, and we’re all truly better for it.
You are getting a gift that may not feel like a gift right now. For me, that love has grown into something I struggle to even put into words. Nobody on earth will make you smile, laugh, lean into your silly side, or teach you quite the way your kiddo with DS does.
I have learned there are things to grieve with this diagnosis, but there are far more things to celebrate. That lesson and celebration comes with time. For now, I sit with you in the tension.
You are not alone.
