Parenting has been, like much of my life, about looking ahead to the future. I am a planner and a preparer: taking prenatal vitamins months before trying to get pregnant; eating a well-balanced pregnancy diet in the hopes of the healthiest possible baby; breastfeeding; reading to my sons nightly—both for their enjoyment now and with the hope of instilling a love of books as they grow older. We are a two-parent family, both of us working full-time outside the home with hour-long commutes, running on color-coded Google calendars and ever-expanding to-do lists, and at this point in our lives, with two boys ages 2 and 4, it feels like we are rarely able to stop and live in the moment with them, so busy are we looking ahead and preparing for what’s next. And yet. A recent essay in the New York Times stopped me in my tracks: Emily Rapp wrote “Notes from a Dragon Mom” about parenting her son Ronan, her delicious 18-month-old son who, born with Tay-Sachs, a rare genetic disorder, will likely die before his third birthday.
I warn you, Rapp’s essay about being a dragon mom (which is, as she puts it, “fierce and loyal and loving as hell”) is painful to read—literally heartbreaking to anyone, let alone a parent. She describes how, despite all of her planning (including two prenatal tests for Tay-Sachs that both came back negative), she is now parenting a child “for whom there is no future.” And of course, for so many of us, parenting is overwhelmingly about the future—about making the best choices for them down the road, choosing the right schools and activities, helping them become a happy, grown-up version of the little people they are now.
Writes Rapp, “But 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. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.”
Some of what Rapp describes sounds, as she puts it, almost “blissful”: cuddling, naps, TV time, all the desserts Ronan wants. “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. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.”
But of course, Rapp would trade the sweet joy of those moments for a chance at something better for Ronan. “I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.”
I cannot imagine letting my sons go. I have the good fortune to not have to do that yet. I know that that day will come—hopefully far off into the future, but I will be letting them go out on their own into the great big world beyond our family’s home, hopefully off to college and marriage and bright futures of their own. But I will still be there for them, and they for me. Or so I hope.
Alas, that is not the case for Rapp. She concludes, “This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.” And so I sit here with tears in my eyes and think, “Thank God I can close this screen. I can shut out her words. I don’t have to think about losing my sons.” And yet. None of us can ever know for certain what the future holds, and as much as I want to stick my fingers in my ears and cover my eyes at even the slightest glimpse of what life is like to parent a child you know you are going to lose, I am thankful to Rapp for reminding me of what I have right in front of me: my two incredible boys, so silly and smart and wild and unruly and loud and messy… and mine to enjoy, right now.