Jason and I attended two Down syndrome webinars yesterday given by the wonderful Dr. Brian Skotko. Conversations on a whole list of medical concerns well-known in our community… Alzheimer’s, nutrition, thyroid, mental wellness, celiac disease, leukemia, spinal instability, just to name a few. And, of course, puberty and Covid.
As I sat there taking notes, it struck me. Way back in the beginning, this would have felt so overwhelming. So much information. So much to think about, to do, to worry about. But I realized I am at the point in my journey of being Ian’s mom that I really don’t think about Down syndrome that much. This was the first time that I had solely focused on Down syndrome in a long time. Sure, it is always there but it is not front and center. Down syndrome is a part of who Ian is, but who he is is more than the picture a diagnosis paints.
I looked at Dr. Skotko’s list of potential medical issues and realized that we have addressed many of those already with our doctors. And for some of them, we’ve walked down well-worn paths, like open heart surgery, celiac disease and, now, puberty.
But the key here is “well-worn paths.” It has never been alone. We have never been alone. Our incredible Down syndrome community shows up for each other time and time again.
Things feel so very hard when we feel alone. That’s when hopelessness creeps in. The fear seeps into those cracked pieces of our foundations, and anxiety soon follows to completely fill them up. We feel shaky and unsteady, scared and alone. Until you realize, you are not alone. We are not alone.
Knowing the depths of what he was sharing to keep our children with Down syndrome healthy, Dr. Skotko acknowledged how it feels to think about it all. And then told us, “Our community does the impossible on a weekly and daily basis.” I wrote that down word-for-word. We sure do. And not just our Down syndrome community but the entire special needs community. This community that has been one of the highlights of my life. How blessed are we? To be loved so deeply by family and friends and those who share this journey with us.
This afternoon our CDSPG family came together to cook a meal with a self-advocate leading the way in the kitchen. Tonight, we enjoyed a delicious meal of stuffed chicken breasts made by Ian. Eleven years ago I could not have imagined our son with Down syndrome making dinner for us. And now I dream of the day he has us over to his own apartment for a dinner he made. Peaks, valleys, flat roads. Sunny days and rainy ones. Those who love us and our beautiful community… they are here for all of it.