I don’t like to offer up the fact that my oldest child has Down syndrome. It comes up in conversation from time to time; and I almost always regret mentioning it. Afterward I rehash those conversations trying to figure out what possessed me to bring it up. My son’s disability is no one’s business. It does not define him. It’s just one of the many things that make him who he is.
Yet, I still do it. While talking to a fellow mother of 3 about how challenging it is raising a large family, I felt it necessary to mention I don’t really know if my middle child is demanding because my oldest has Down syndrome.
When talking to friends about our children’s school experiences, I sometimes throw in that it’s different for us because he has a disability.
I occasionally find myself reminding family members that our lives are different because of my son’s developmental delays.
Reactions vary, but strangers and acquaintances often say how sorry they are or offer up condolences for my son who is alive and well! Their response triggers immediate remorse divulging anything about his disability. (There is nothing to be sorry for!) Some family and friends have told me raising a child with Down syndrome isn’t much different than their own experience. Trying to explain to them the nuances and the difficulties is pointless. So why do I do it?
Every time I mention it my son’s disability, I feel like I’m betraying him. Every time I remind somebody he has Down syndrome I’m doing him a disservice. Every time I talk about how different our experience is, I’m inadvertently telling people he is different; and not in a good way.
In reality, what I’m doing is selfish. Down syndrome doesn’t define him, but since he was born, his disability has defined me. He has changed my life in so many ways that I am still processing who the new me is. His disability has taken over every part of my life – from my job as a parent to my actual job to my volunteer work to my social life. In many ways, I’m still transitioning into this new role he thrust me into nearly 6 years ago.
But he always has been, and always will be, Arlo. Some of that has to do with Down syndrome, but most of it has to do with his tenacity, his fierce sense of humor, his kindness, his love for his family, his gorgeously terrible singing voice, his smile that penetrates your soul, and so many other things that make him who he is.
I need to remind myself that next time I’m compelled to over-explain our perfectly imperfect lives.