Chicago mom: Stop the platitudes about my son with Down syndrome

Being the mother of Bobby, a boy with Down syndrome, is for many my induction into the Selfless Mother Club. Strangers assume that my life must be one of constant sacrifice as I care for a child with so many extra needs. I get it. I sometimes look at friends who have children with complex medical diagnoses and feel convinced I couldn’t walk in their shoes.

So when I hear, “you are a special mother,” “God bless you,” and “I don’t think I could do it,” I don’t scowl in anger or digress into the rant burning on my tongue. I mutter something about the wonderfulness of Bobby and hastily turn away, ending the awkward situation.

But don’t get me wrong, the anger is lurking.

Bobby, after all, is right there, listening to these platitudes. I give my son a constant stream of feedback: about how strong he is for having survived three heart surgeries, for how funny he is when he silly-dances, for how unthoughtful he is when he plops down in the middle of a store and refuses to walk. And most of all, how happy I feel when I am with him.

Then a stranger comes along. They only see the burden of Down syndrome and can’t imagine the abundance of what Bobby gives in our relationship. They never think that I have given up a career because I can’t bring myself to give up time with Bobby.

My son is demeaned by the false accolades sent my way.

My own mother inducted herself into the Selfless Mother Hall of Fame. Eight children. Thousands of loads of laundry. Thousands more meals cooked, dishes washed. My head spins at the organization required, the creativity used in making do, the going without that both of my parents did. I respect it all, but I find it hard to ooze gratitude when my mother, over and over and over again, recounted her sacrifices to me and reinforced all the ways that I was not worthy of her gifts. She was so steeped in her pot of resentments that she could not give without demeaning me.

I would never do that to Bobby, and so it angers me when strangers diminish him with careless words.

I chose to have my son. He does not have the option to set out and find a new family, nor does he, at 5, have the ability to care for himself. Certainly, I don’t want my son to be spoiled, ignoring what I do for him and assuming that the world will always provide.

Teaching Bobby appreciation does not require me to count the things I do for him as endless sacrifices, as debits to an emotional account he can never hope to repay. Nor does it require Bobby to see himself as a burden.

He’s here because I wanted him here.

Anne Grunsted is a former data analyst turned stay-at-home mom for her son with Down syndrome. She now advocates for children who lack a strong voice. She lives in Chicago with her partner/soon-to-be wife of nearly 15 years.

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