A few weeks ago, I asked, “Is Down syndrome Abnormal?” Although that post focused upon the reasons we might or might not want to use the term abnormal to describe Down syndrome, it led into a conversation through the comments section about whether or not there is any reason to fear having a baby with Down syndrome. I argued that most of our social aversions to Down syndrome either aren’t based in reality (life expectancy has risen dramatically in recent years, for instance, though most people don’t know this) OR are a reflection of misguided social values. But the question remains: is it ever right or reasonable to be averse to or fearful of Down syndrome?
I was going to write a post in which I list all the potential, and frightening, health complications that can accompany Down syndrome. And then I was going to write about the social construction of disability, about how we as a culture need to value people for their intrinsic self-worth, not for their abilities or IQ scores.
But then I decided we are asking the wrong question. I’ve said it before and I’ll say it again: it is virtually impossible to talk about Down syndrome in the abstract. Down syndrome occurs, always, in the context of a particular human being. Each particular human being, regardless of our chromosome count, has particular strengths and weaknesses. And so I can’t really write about aversion to Down syndrome. But I can write about whether or not it is reasonable to be averse to having a daughter like Penny, who has Down syndrome.Penny has been to the hospital for one heart procedure, four sets of tubes, and two eye surgeries. When she uses a whiny voice, which she does nearly every day, I want to pull my hair out. She is still trying to figure out how to hug Marilee without squeezing too tight and making her scream. When I get a call or an email from school about another set of behavioral challenges, I want to cry.
Penny also reads chapter books out loud of her own volition. She asks me to pray for her to be able to make good choices in school. She works harder to understand math and learn how to tie her shoes and try to pay attention in ballet than I ever did. She climbs into Marilee’s crib in the morning and makes her little sister giggle. Her teachers, friends, and therapists shake their head with some combination of exasperation, wonder, and delight when they talk about her.
Other parents with other children with Down syndrome could give you a list of their kids’ particular problems–the reasons to be averse–and their kids’ particular wonderful traits.
Early on in Penny’s life, whenever she was out of the room, I felt swallowed up by fear. I didn’t have enough experience with my daughter to trust that what was true when she was with me–her beauty and sweetness and gentleness, my ability to care for her and love her and trust that it would all be fine–was true even when she was apart from me. The abstraction of Down syndrome overshadowed my love. But in time, love erased fear. And in time, the abstract, scary, concept of Down syndrome became the beautiful, life-giving reality of a little girl. And she is all the answer I need.