Read this: Notes from a Dragon Mom.
It's an essay by Emily Rapp, whose 18-month-old son, Ronan, has Tay-Sachs, a fatal, incurable disease.
If you're like me, you don't want to read it. You don't want to confront your worst fear, which is that your child could die before you. Even in your mind, you don't want to go there.
But read it anyway.
It's devastatingly sad. It's also one of the best things I've read about parenting, ever.
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.
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.
I read this on the night of my son's second birthday, after he'd gone to bed. I'd been talking with another mom at his party about the ridiculousness of competitive preschool admissions. After reading it, I wanted to go into his room, cuddle him and kiss his soft cheeks one more time. I resisted, though, knowing -- hoping -- that I would see him again tomorrow, and the day after that, and the day after that. What a gift.
Nothing I write could change things for Emily and her son. Nothing we do could make her pain go away. But I hope that I can at least honor Ronan and his mother by taking some inspiration from her essay: To love my child for who he is, not who he will be. To love him today, the best I can. That's all any of us can do.
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.