Parents' Only Job is to Love Our Children Today

A beautiful, heartbreaking New York Times essay titled Notes from a Dragon Mom is making the rounds on Facebook and Twitter today. Writer Emily Rapp writes about parenting her young son, Ronan, who has Tay-Sachs disease, a degenerative condition that means he will certainly die in his early years. Rapp notes how profoundly this alters the usual future-oriented focus of parenting. Most parents think long, hard, and often about how our parenting choices—what our children eat, do, and learn—will affect their chances of growing into healthy, successful adults. For Rapp, such concerns are irrelevant. She notes that "parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever."

I won't try to summarize this essay beyond this brief introduction. It is worth reading in full (it's not long). I'll just note a couple of things that are particularly relevant to this blog. First, Rapp underwent prenatal diagnosis and twice was told the test for Tay-Sachs was negative. This echoes my friend Amy Julia Becker's experience in her first pregnancy, in which a high-level ultrasound supposedly indicated that her baby definitely did not have Down syndrome, when actually she did. These stories are a useful (and perhaps uncomfortable) reminder that, no matter how much we want prenatal diagnosis to predict what the future holds, its utility and accuracy are limited.

Second, Rapp echoes many of my thoughts as the mother of a child with a genetic disorder. Of course, the disorder that I and my daughter live with is very, very different from Tay-Sachs. It's not fatal for one thing. I have every reason to believe that my daughter will have a bright, full, and successful future. There is no doubt that Rapp has had a very, very different mothering experience than I have.

But I've often thought that OI—the genetic bone disorder that I and my daughter have—has been the thing that has most affected what kind of parent I am. OI is a capricious, unpredictable disorder. Two of my daughter's worst fractures resulted from a scooter accident, but then there was the time she fell in our living room because her leg broke mid-stride; she broke and then she fell. When I was young, I once broke my femur when I sat down on the floor, tucking my legs under me. Of my daughter's 11 broken bones, all except those that occurred in the scooter accident occurred at home, in the living room or a bedroom, during some mundane activity—walking from one end of the room to the other, putting on pajamas, dancing with her sister. Ultimately, there is nothing I can do to protect her from fractures. It doesn't matter what she eats or what limits we put on her activity. After all, what are we going to do? Install grab bars on every wall? Tell her she can't walk?

So while of course I try to feed my kids healthy food, instill important safety rules, and support their interests in music, art, and sports, I've also understood from the beginning that there's an awful lot beyond my control as a parent. Despite the rampant cultural pressure on parents to do all the "right" things to ensure our kids' health and success, nothing we do guarantees that our children will grow into happy, healthy, productive adults. That realization can be depressing. Or it can be freeing. It forces us to engage with gratitude with the children we actually have (rather than those we expected to have), and to respond to them based on who they are and what they need from us today, rather than always thinking ahead to how today's actions will affect their future.

Rapp concludes her essay with this: "Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."