It’s not true across the board, but a remarkable number (dare I guess, a majority) of people who have children with Down syndrome seem to believe that their children are indeed special, in the positive sense of that word. Other parents say things like, “Our whole family has become more peaceful since he’s been in our midst” or, with a smile of wonder, “There’s just something different about her” or, “He seems to be able to love without a filter.”
I used to resist the positive generalizations about kids with Down syndrome, the talk of “them” being “angels” or “so loving.” I still resist it a bit, both because there are plenty of days when Penny whines or pushes her brother or crosses her arms and refuses to offer a hug, and also because those categorizations often gloss over the full humanity of people with Down syndrome, as if that extra chromosome doesn’t involve struggle and hardship and even at times suffering for everyone involved.
My friend and fellow Patheos blogger Ellen Painter Dollar and I have had a running conversation about this tension between the “good” and “not good” aspects of disability. Ellen has Osteogenesis Imperfecta, and she can say, categorically, that she “hates” her disability. Has good come of it? Certainly. But at its core, OI has caused brokenness and suffering. Period. In a blog post, “Do I Hate My Life? No. But I Do Hate My Disability,” Ellen writes:
… when OI punches us in the gut—when it shoves our lives off-kilter with a new fracture and the emotional despair that accompanies it, when a sore and swollen knee awakens the fear that someday I’ll no longer be able to do the physical work involved in caring for my family—then, yes, I hate OI. Passionately.
And I’m not the only one. I have numerous Facebook acquaintances with kids with OI. When one of those kids has yet another broken bone, quite often what their mom or dad has to say about it is, “I hate this disease.” Sometimes with a profanity or two thrown in for good measure.
In fact, I have come to believe that there is something categorically good about Down syndrome. Plenty of my fellow parents would disagree, but many would nod their heads. I recognize many things about Down syndrome that are not good–in Penny’s case they range from innocuous issues like flat feet and small ears to more serious problems like impulsivity, and of course for others they also run the gamut that can include childhood leukemia and really severe heart defects. And yet I continue to believe that there is something about Down syndrome that is good, that prompts love and joy and laughter and brings people together. It’s much harder to quantify or articulate, and yet I suspect it is true.
Last night, as I was putting Penny to bed, I made a list of things she had done that day that made me feel proud. She read Pinkalicious out loud to me in the morning. She did the monkey bars almost all by herself for the first time. And she tried to be a helpful big sister. This litany of praise came after I found her up in Marilee’s room. Marilee had been screaming, and I stood outside the room, listening to Penny, “Marilee, Marilee, where’s your passy? Oh, silly goose, it’s in your crib. Pick it up and put it in your mouth. Sweet girl. You need to stop crying.” Then a pause as Marilee settled down and Penny turned to walk away and Marilee started crying again. And then Penny’s voice, “Marilee. How will I go to bed if you don’t stop crying?” I finally intervened, we sang to Marilee together, and I took Penny back to bed.
I wouldn’t say that Penny’s reading, monkey bars, and comfort to Marilee came in spite of Down syndrome, and I wouldn’t say they came because of it either. I don’t know if I can say I am grateful that Penny has Down syndrome. But I can say that I am grateful for who she is, exactly as she is.