So many of us parents spend our time in the future. Whether it’s contemplating tomorrow's schedule or school choices years down the road or what our child’s therapy session will look like in 2042.

A wrenching argument against this tendency was published this weekend in the New York Times. In “Notes From a Dragon Mom,” Emily Rapp writes about being forced to live in the moment with her son. Rapp, a writer and a professor of creative writing at the Santa Fe University of Art and Design, is the mother of a toddler with the genetic disorder Tay-Sachs disease. He is not expected to live until age 3.

Here’s an excerpt:

“Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say ‘Mama,’ and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves.”

“We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. 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.”

Rapp goes on to challenge the current culture of pushing kids, of expecting great things in a future that may never materialize:

“And there’s this: 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.”

From “Notes From a Dragon Mom,” by Emily Rapp

After reading the essay, I made a deal with myself to slow down with my girls today. This morning, we skipped school and rode a carousel together. I felt very proud of the effort and, at one point, slipped out from under my preschooler’s grip and snapped a few pictures of the girls on their respective horses. Too late, I realized I’d missed much of the ride because I was trying to record it for future reminiscing.

Living in the moment is far more difficult than it seems. Though not nearly as difficult as knowing that there’s no other choice.

Does your child have a debilitating illness? How has it changed your approach to parenting?