I don’t know why I ever enter these conversations. And yet, I do it every time.
This time, it was a frantic post in a Facebook group of local people—a woman inquiring on behalf of her little sister: “Has anyone been pregnant and told their baby has a 1:65 chance of having Down syndrome? My little sister got the results of her test, and it shows an increased risk, plus one marker on the ultrasound. She is really upset right now!”
I replied with my standard answer for these sorts of things: “A lot of people get increased odds and/or soft markers, and it often turns out to be nothing. But if the baby does turn out to have Down syndrome and your sister would like someone to talk to, please feel free to connect us. My son has Down syndrome and is the best thing that ever happened to me. She won’t find a pro-life or pro-choice agenda from me—just a friendly ear willing to listen.”
Because I made this comment, I then got to see all of the other comments on this Facebook thread. And I have to say, there were probably fifty comments, and not one of them was negative—no comments about “burdens on society” or it being “cruel to bring the child into the world.” They were all messages of support, which was wonderful.
But…sometimes messages of support are worded in ways that are a little painful. I can’t tell you how many of the messages were, “I was told I had increased risk too, and my baby turned out perfect!”
Hmmm. So my baby, with his 47 chromosomes, is not perfect? I don’t see it that way.
And then there were the comments that, “I had increased risks, and my son turned out perfectly normal—he’s very smart!”
So if that baby had been born with Down syndrome, he wouldn’t be smart? I don’t see it that way.
And my personal favorite: “I had increased risks, too, but I prayed and prayed, and my daughter turned out just fine!”
So if I had just prayed more, my son wouldn’t have Down syndrome? I don’t see it that way.
The truth is, my views on the Almighty are complicated. I’m a very fact-driven person, so the idea of believing wholeheartedly in something intangible that can’t be proven is uncomfortable to me. There are so many religions, so many people who insist that their church teaches the true word of God…and in reality, who’s to say which one is right? If any is right? The uncertainty is hard for me to come to grips with.
But I do find comfort in believing that some sort of Almighty is out there looking out for us. And so I choose to believe in a God who is kind and merciful, and who wants us to live the best life we can, being kind to others. I guess you could say that kindness is my religion.
And in my view of God, he has some sort of divine plan for each of us. I prayed for each of my children, but what I always asked was, “Please give me the child I am meant to have.” I never asked for my babies to be smart or healthy or attractive—it was always just, “Please give me the child I am meant to have.” Because it comforted me to think that a Supreme Being would indeed deliver me the children I was meant to have. I realize there’s no fact in this, no logic I can fall back on—but it was a way that I found comfort, so I chose to believe it.
I believed so much in this that God figured in us naming both of our children. We picked the name Theodore in part because it means “gift from God.” And Samuel means “God listened,” which we truly felt was the case when we both prayed because our baby’s life was in danger.
So when someone says, “I prayed and prayed, and my baby turned out fine” and what they mean is “and my baby didn’t end up having Down syndrome”…well, even though I know they meant no harm with their words, it still bothers me. Because I prayed for my kids, too, and they are fine. Sure, one has Down syndrome and one has autism, but that doesn’t mean they’re any less than fine. And when someone says, “I had increased risk too, but my baby turned out perfect,” I feel the same way—a little bothered by the implication that my own baby was not perfect. Because to me, both of my children are perfect.
They aren’t perfect because they’re perfectly behaved—far from it on some days, in fact! They aren’t perfect because they’re destined for a future at Harvard and eventually becoming the president of the United States. I joke about that with regard to Theo because of his great charisma and love of being in charge, but the truth is I see him as far more likely to be a naturalist or a park ranger somewhere, happily puttering around in the outdoors and talking people’s ears off about anything and everything. They aren’t perfect because they have the appropriate number of chromosomes—in fact, one has one chromosome too many, and the other has a fraction of a chromosome too few!
No, they are perfect to me because they were chosen for me. Whatever Supreme Being had a hand in the miracle that is my two kids, that Being created them as the perfect puzzle pieces to fit our family. The bumps and knobs created by life’s jigsaw were filled in by these two little pieces, and now we form a smooth whole.
I know people mean no harm when they say these things—just the fact that they are supporting this young pregnant mother is touching to me. But there is, and probably will always be, a small piece of me that hears phrases like “…and my baby turned out to be perfect” or “…I prayed about it, and my baby turned out just fine” and thinks, “Mine too. You may not realize it, but mine did, too.”