Parenting Advice from the Brink


The Gray Lady ran an opinion column this weekend by Emily Rapp, mother to 18-month-old Ronan. Ronan has Tay-Sachs disease and, by all medical estimates, will die in a particularly gruesome manner before he is three.

The subject is chilling, but I was particularly struck by her critical analysis–wisdom gained in suffering–of our parenting culture. Today’s parenting advice, she writes, is entirely future-oriented:

“All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.”

Then she throws the punch.

But I have abandoned the future…

Emily, I know you say that no one ever asks advice from the parents of a terminally ill infant. But I have learned so much from you, and from reading and knowing the mothers of children who have died. Your particular wisdom is this:

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. 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.

While parents of dying children didn’t ask to be signposts, they have in fact become reminders of a truth all parents forget at their own peril: Our children are not ours first. Their lives are not directed to an imagined future, a blank slate on which we get to draw what we would see. Children themselves are not future-oriented. They live now and today.

Miriam loves ballet class today, in this moment. She dreams of getting bigger and making stronger leaps and more powerful turns, but those dreams do not yet diminish the drills and little jumps she can make right now. Belly loves to work out puzzles and build towers, regardless of the future I imagine for her of mathematical prowess or craftsmanship.

For these little people, their lives are already a whole. If Miriam were to die tomorrow (and who knows what the hour is for any one of us?), Todd and I would be devastated and the world would wonder, “What could have been?”

But she would not.

The one who dies has made a complete life. The end and the beginning are known to her and to God.

So, before we parents of the healthy, strong children leave Emily Rapp and Ronan to the mercy of God, perhaps we can admire her wisdom and learn from her how to prepare our children for the only future we know: that moment when the veil between this world and the next lifts. Are they ready to step peacefully from God’s hidden presence into his unhidden presence? Have we reassured them that death is not the end or the destruction of dreams? Is our confidence in the victory of life over death the guiding principle of our parenting style and our parenting advice (which we so freely dish when it comes to sleep schedules, slings, and breastfeeding)?

If first things are first, then in our homes, too, “the day-to-day is peaceful, even bliss.” And the end will be awful, but it will not be the end.


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