The Best Argument For Relaxed Parenting Is This Tragic Story

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Emily Rapp is an author and professor of creative writing in New Mexico. She’s also mother to Ronan, a son she describes with love. He’s pictured here.

In a piece for the New York Times, she explains that Ronan has Tay-Sachs, the rare but deadly genetic disorder that is inherited. It occurs when the body lacks a protein that helps break down a chemical found in nerve tissue called gangliosides. Rapp writes that her son will likely die in the next year and a half and prior to that he’ll slowly regress into a vegetative state, become paralyzed, experience seizures and lose all of his senses.

She writes that no one asks parents of terminal children for parenting advice and yet I couldn’t help but think she offered wisdom to anyone who read her article.

She notes that during her pregnancy, she and her husband thought about all of the questions first-time parents think about — breastfeeding, music classes, education. She planned and couldn’t stop thinking of her child’s 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.

She writes about the way that parents want their children to prosper, no matter what, and all of the things we do to ensure that. This is the typical model of modern parenting. But Rapp has abandoned the future, she says, and she couldn’t give one whit about developmental milestones, much less scoring a perfect SAT.

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.

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.

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.

What wisdom, though, right? She goes on to say some things that competitive parents won’t want to hear — the truth about how much any of their competition matters.

It’s a beautiful piece and I hope you read the whole thing. All of us have something to learn from parents with differing insights such as Rapp’s. And hopefully we’ll think about it a bit before we Tiger Mom our way through the next day.