Thoughts From the Parent of That Kid

 

Chris took a rare step into my world this past week. That is, the world of moms making comments that aren’t meant to be hurtful, but sometimes are. And I only say that’s “my world” because women tend to talk about things like this more than I think men do, so I’ve experienced several times what Chris just experienced for the first time.

Apparently, he had been part of a conversation where a pregnant coworker mentioned having prenatal testing. “You know, checking for trisomies,” she said. She was relieved that her growing fetus does not have a trisomy.

Understandably. Even those of us who adore someone with a trisomy realize that when you’re pregnant, the best news you can get is “typically developing baby.” Because trisomies can mean a lot of things. Many trisomies can mean incompatibility with life. Trisomy 21 (a.k.a. Down syndrome) can mean a greatly increased risk of miscarriage or stillbirth. It can mean a 50 percent chance of a heart defect. It can mean myriad other health concerns. And obviously, it definitely means an intellectual and development disability. And even if you embrace the diversity that comes with having a child with an intellectual and developmental disability and celebrate that child for all that he or she is, no one embraces having a child with health issues. You embrace the child, of course—of that there’s no doubt. But you don’t embrace the health concerns.

This particular coworker suffered a miscarriage a while back, and Chris was well aware that her relief at a clear prenatal screen was probably largely to do with a fear that this new pregnancy would suffer a similar fate. So it wasn’t that he blamed his coworker in any way for her relief. Not at all. But at the same time…

“It’s my son,” he said. “She knows my son has a trisomy. I just didn’t know what to say. So I said nothing.”

I get it. Completely. It is a very strange feeling to be part of a conversation where a parent is hoping to get a child that is decidedly not like yours. They may love your child to pieces and appreciate him—but at the same time, they’re hoping theirs is not like yours. And you can understand it, but at the same time, it stings a bit.

To give an incredibly oversimplified analogy, imagine if you had a child with glorious red hair. You don’t know how he got it, since you and your spouse don’t have red hair, but he has it. And then someone tells you, “We just got our prenatal test results back. You know, checking to make sure our baby doesn’t have red hair or anything.” You’d feel…odd. Because you love your child’s red hair. It’s part of who he is! At this point, you really can’t even imagine him without it! And you know that if this person’s baby turned out to be born with red hair, they’d undoubtedly love it—they’d see what they had actually been missing all this time. But at the same time, it would sting a bit to know they didn’t want their child to look like yours. “What’s so wrong with how my child looks?” you’d wonder. “Don’t they see how lovely his hair is?”

Like I said, an incredible oversimplification. Having red hair…or brown hair…or blond hair really doesn’t affect the course of one’s life, whereas having an intellectual and developmental disability does. Having a specific hair color doesn’t mean a risk of health issues, like Down syndrome does. But still, hopefully you see my point: Your child is perfect in your eyes, and to think that someone specifically wants a child that is not like yours is…a little rough sometimes.

It shouldn’t be, though. Because the reality is, when I joke about “winning the genetic lottery” with Sam, I’m really not joking. I feel like an incredibly lucky mother, to have had this incredible little being be given to me. I have learned and grown so much specifically because of that dreaded trisomy. My life is infinitely better because of that trisomy and the person who holds it. We call ourselves “the lucky few,” and it is so very true. We are beyond lucky—even if when we were expecting these amazing souls, many of us would never have believed that to be the case.

And so, I get it. I understand the relief when the prenatal screening comes back with results that suggest the fetus is likely typically developing. I smile along with the pregnant person and offer my best wishes—and I mean it. But secretly, when my heart pinches a little, I whisper to myself, “Oh, but if you only knew what you’re missing….”

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