Family Matters

How Do You Parent When There’s No Tomorrow?

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From the moment a pregnancy test turns up positive, you start thinking about the future. There are baby names to mull and nursery themes to choose and plenty of daydreaming about all the unknowns, including what in the world that developing zygote might become when he/she grows up. Sometimes, the answer may be this: nothing.

In Sunday’s New York Times, Santa Fe creative writing professor Emily Rapp wrote of the singular trajectory her parenting journey has taken. Her son, Ronan, who is 18 months old, has greenish-gold eyes and breath that “smells like sweet rice.” He also has Tay-Sachs disease, a fatal genetic disorder that causes developmental regression. A baby who has learned to crawl, say, will lose that skill over time, along with his abilities to see, to swallow, to breathe. It is a horrible death. Rapp does not expect Ronan to reach his third birthday.

How, she wonders, is it possible to parent in the present tense, without preparing for the future?

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. 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.

Rapp’s situation is not only heartbreaking, but it’s also unsettling because she was tested — twice, both times with negative results — for Tay-Sachs.

It’s possible that Rapp had DNA testing rather than the more sensitive prenatal enzyme-level screening that can pick up more than 100 different Tay-Sachs mutations. Pregnant women who opt to pursue genetic testing should always consult a trained genetic counselor, says Kim Kubilus, director of family services for the National Tay-Sachs & Allied Diseases Association.

Routine screening of parents, who may be carriers, is largely responsible for the decline in diagnoses. Each year, only about 15 cases of infantile Tay-Sachs — the most common form of the disease — are identified in the U.S. At any given time, there are fewer than 200 Americans living with Tay-Sachs. It’s become so rare that many doctors haven’t even heard of the condition.

MORE: Genetic Testing for Kids: Is It a Good Idea?

Rapp doesn’t muse about what she would have done had she learned while pregnant that Ronan had a fatal genetic disorder. In an essay that focuses on the here-and-now, it’s really beside the point.

But she does delve into the silver lining, be that as it may, of Ronan’s diagnosis. In a strange but liberating way, it has freed her from the constraints of “if-then” thinking. While she was pregnant, she wondered if breast-feeding would make her baby smarter, if music class would hone his thinking, if the perfect preschool would pave the way to the perfect college. She no longer does that, nor do other parents who know they will outlive their children.

“Our parents live for the moment and for the day because tomorrow is a big question mark,” says Kubilus. “The truth is, that’s a fact for all of us, but when you have a child whose time is finite, it brings that lesson to the forefront. It’s a horrible way to have to learn that lesson, but it’s also a wonderful gift.”

As Rapp writes, she and her husband 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… 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.

The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words.

Her words are a wake-up call for all parents, regardless of their children’s medical pedigree. In the hectic hubbub of everyday life, the “task” of loving our children can sometimes get sidetracked by homework and violin lessons and soccer practices. It’s not that we don’t love our children — why else would we twist ourselves into pretzels giving them every opportunity to experiment and to succeed? — but it can be easy to lose sight of the importance of focusing on a child’s soul rather than her accomplishments.

I will keep Rapp’s essay and reread it when I need a reminder that there is something far more important than A-major scales and soccer assists. Parenting, as Rapp writes, “is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.”

Bonnie Rochman is a reporter at TIME. Find her on Twitter at @brochman. You can also continue the discussion on TIME‘s Facebook page and on Twitter at @TIME.