To some, it probably seems like I talk a lot about Down syndrome. And maybe I do—after all, I not only have a son with it, but I work with two organizations devoted to supporting families who have a member with Down syndrome. So even though raising Sam is largely like raising any other child—albeit one who develops at a slower pace—and thus Down syndrome doesn’t have a huge effect on our daily life, I probably do talk about it a lot.
But there’s another reason why I talk about it a lot: Because there is still a lot of misinformation out there. Our recent vacation, which was bookended with odd conversations about Down syndrome, provides an example.
We stayed in a hotel overnight on our drive to Portland, and when we were at breakfast in the mezzanine the next morning, a middle-aged couple swooped down on our table and immediately started gushing over Sam. They didn’t say a word to Theo or even acknowledge him, which annoyed me a bit (at least say hello to the other child sitting there!), but instead just went on and on about Sam. It turns out they have a boy with Down syndrome in their church, and did you know that a doctor from Stanford, who now is a faith healer, came to their church and prayed over him? Because miracles can happen—the faith healer has seen quadriplegics walk! She has seen terminally ill people recover! Maybe she could cure Down syndrome! “You never know!” they gushed. “Miracles can happen!”
First of all, this is logically impossible. Even people who believe in the power of prayer generally realize that only curable things can be cured. Down syndrome isn’t “curable” because it’s not a disease; it’s a syndrome that affects every single cell in the body—all millions or billions of them. And a person’s basic genetic makeup cannot be “cured.”
But even if it was possible, it was a bit offensive. Because essentially, the message was “it would be a miracle if your son wasn’t the way he was.” I happen to heartily disagree. I love the way my son is—I truly believe his genetic makeup is exactly how it was supposed to be, and I would not change it. There are things that go along with Down syndrome that I would change, most notably the frightening health issues that can occur. But the actual Down syndrome that is a part of every cell in his body? I wouldn’t change that, and I don’t think it would be a “miracle” if he wasn’t that way.
This is an area where Chris and I have a slight difference of opinion. He loves Sam with all his heart and accepts that Down syndrome is a part of him and has always been (and always will be) a part of him, but if he could “fix” Sam’s Down syndrome, he would. He hates to see Sam have to struggle, and for that reason, he would “cure” Sam if he could. He knows that’s not possible, of course, but he would. But even so, he does not feel that it would be a “miracle” if Sam were different than he is. This very same day, I learned of an eight-month-old with Down syndrome who was losing his battle for life. He’s one of the Rockin’ kids, and he had a heart surgery that is not uncommon for babies with Down syndrome. The vast majority recover just fine, but Leo didn’t. He was on life support, and the medical team told his parents that it would be a miracle if he were able to survive when they took him off life support. And Chris’s immediate response was, “That is the miracle that you pray for, not that my son wouldn’t have Down syndrome anymore.” My sentiments exactly: If you want to pray for a child with Down syndrome, pray for their health. Believe me, we all appreciate the prayers for health—even those of us who aren’t churchgoers. But most of us would agree that there’s no need to pray for our children to have a different genetic makeup: It would never happen anyway, and many of us wouldn’t even want it to happen.
But I know these people meant no harm in their comments, so we just smiled politely and looked knowingly at each other.
Eleven days later, on the tail end of our vacation, we took the boys to a park for an hour to stretch their legs and play on the long drive home. A young mother came up to me and said, “Your son is absolutely precious! I need to tell you something I just learned about Down syndrome….” And then she proceeded to tell me all about how “they” had discovered that Down syndrome was the result of the cow pox in the original smallpox vaccine, and all cases of Down syndrome could be traced back to people who had that strain of the smallpox vaccine years and years ago.
Let me tell you, I’ve read a lot of medical literature about Down syndrome, and I’ve never read that. But I was curious where she got her info, so I googled around. It seems that one doctor (quack??) somewhere along the way announced this, and apparently the woman took it as truth, even though no one else in the medical research field has made any similar claims.
But the woman seemed quite adamant, so I just said noncommittally, “Oh, that’s interesting…” and let it drop. I’m not good at thinking of quick responses, and I don’t really have any interest in alienating someone who isn’t trying to be rude anyway. Chris later told me that he heard that woman making some strong anti-vaccination comments to another mother on the playground, so I think that’s just where her beliefs lie.
I was a mildly annoyed, too. Personally, I can’t imagine walking up to a parent of a child with a disability and cheerfully announcing, “Hey, you want to know how your child got to be the way he/she is?!” It just seems a bit rude to me. But again, I don’t think she had any intention of being rude, so I let it drop.
Whenever we have these encounters, Chris and I find ourselves half exasperated and half amused. It’s not uncommon to find people who think Down syndrome is the result of something the mother did or didn’t do during pregnancy (Note: it’s not), so when we experience something like this, Chris will jokingly say later, “Yeah, if you had just taken your folic acid while pregnant!” or “See, that’s what you get for drinking all those margaritas while pregnant!” Because those statements are equally preposterous: Even if I had drank margaritas while pregnant and skipped prenatal vitamins, it wouldn’t have caused Sam to have Down syndrome; it’s present in the mother’s egg (most of the time) or the father’s sperm (occasionally) from the get-go, before the egg is even fertilized.
Neither of us expects the general public to know all about Down syndrome, of course, but it is half amusing and half exasperating when people come up to us out of the blue with unlikely claims about how our son got his genetic makeup or how we can “cure” him.
So anyway, I’ll keep talking about Down syndrome and letting people know that my son is awesome, that he was awesome from the time he was an unfertilized egg (or an eager sperm), and that he will always be awesome, and we embrace his unique genetic makeup as it is. Or better yet, I’ll let him show them just how awesome he is. 🙂