Things we cannot change

Over the weekend the New York Times ran a wrenching essay by Emily Rapp, a mom whose 18-month-old son has the genetic disorder Tay-Sachs and will likely die before he’s three.

The essay, which has circulated widely, is about what it’s like to care for a child when there’s no reason to plan for his future.  “Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now,” she writes. “No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.”

And because happy endings are not possible for her son, Rapp says that she’s had no choice but to find a different way to value the time she has to spend with him:

I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment…

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and … healthy? Well, no….

Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

I don’t understand what it’s like to be Emily Rapp any more than I understood what it’s like to love a child before Jay was born.  But I do know that the day Jay was born my worst fear in the world became losing him.  After finishing the essay I sat in my chair, not doing anything.  I wanted to share it with Caroline but for a moment it didn’t feel right to speak.

Caroline and I may have a bias against infant yoga classes, but we do plan for Jay and Wally’s futures.  For most of Jay’s first year, in fact, it felt like all we did was plot: How to get Jay to nurse, how to get Jay to stop cruising and start walking, how to get Jay to sleep through the night.   This preoccupation with problem solving made parenting feel very thin at times.

Which brings me to how we’ve recently found a measure of grace in an unexpected place.  Our prompt has been nothing as devastating as a terminally ill child; Rapp’s is the kind of wisdom I hope I never have.  But in dealing with Wally, who doesn’t sleep these days, Caroline and I have been talking about what it’s like to stop trying to make our children into something more or better or different than they are right now.

(I should say first that it’s unfair to Wally to have his bad sleeping be the first specific thing I write about him in weeks.  Because he’s the sweetest little guy.  He seems to have only two speeds: tired, and irrepressibly happy.  He smiles so easily that sometimes Caroline and I want to say to him, “This is the real world, buddy!  You have a big brother!  Things aren’t that great!”)

Still, as sweet as Wally is there’s no sugar coating his sleep habits.  And at 2am when one or the other of us is pacing him around our bedroom again, it feels like we can’t let another day pass without fixing the situation.  We’ve considered cry-it-out sleep training, supplementing with formula, turning off the nightlight, moving his bassinet closer to our bed, moving it farther away.

But in the end we’ve decided to do nothing, at least for now.  Caroline’s right when she says Wally’s too young to “sleep train” – he’s four-months-old and this is who he is at the moment.  We could go crazy trying every little sleep permutation or we could just accept that this isn’t the season for a good night’s sleep.  This acceptance doesn’t make it any more pleasant to get woken up in the middle of a dream, but it does make it easier to enjoy the warmth of Wally’s head against my chest as I walk him through the night.

Related Posts from Growing Sideways

The feeling you get when a baby is born

Tonight to fall asleep


1 thought on “Things we cannot change

  1. Not only do we, as parents, try to problem solve our way through our children’s days, but others are also eager to give advice on the “best way” to raise children. The essay by Emily Rapp promotes a reflection on just being present for your child. So sad that she and her husband are facing a short life span for their son, a heartbreaking reality, yet she has written something beautiful about her experience. Thank you for bringing this to your readers’ attention.

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