By Dave Andrusko
Editor’s note. October is Down Syndrome Awareness Month. I wrote the following story two years ago, so it’s not new. Emily Rapp’s child has Tay Sachs, not Down syndrome. One is fatal, the other means the child could well have a more-or-less normal lifespan. But what she had to say about parenthood in such circumstances speaks in a universal language. So I’m sharing it with you once again. Please share it with friends and family.
Many of our readers are parents, with a well-developed, acute sensitivity to children and their health. My wife and I have four kids (and now a granddaughter), and we have been blessed that none have serious, let alone life-threatening, illnesses.
In the back of my mind I recognized the name Emily Rapp. By the fourth sentence of “Notes From a Dragon Mom,” I remembered why. Rapp is the mother of Ronan, who is 18 months old, who in all likelihood will die before he reaches age three. Ronan was born with Tay-Sachs, a rare genetic disorder. His death will be the kind that tears at any parent’s soul.
It would be trite to describe Rapp’s op-ed in the Saturday’s New York Times as inspirational. But what she does is to remind us in so many ways of what real parenting is all about.
It’s not about preparing, from month one, to raise Super Baby who will someday graduate magna sum laude from Harvard. And it’s not, as Rapp reminds us, about waiting for our children—Ronan—to “make us proud.” It’s not about expecting “future returns on our investment.”
The existential question she raise here is the same one you find pondered on her blog: “How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?”
Rapp anticipates what she knows will be most people’s shock and immediately adds:
“Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.”
With “no prizes to win, no outcomes to monitor, discuss, compare,” Ronan “has given us a terrible freedom from expectations.” Rapp outlines her day with her son: “cuddling, feedings, naps.”
What is “ the only task”? “[T]o love, and we tell him we love him, not caring that he doesn’t understand the words,” Rapp writes. “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.”
But Rapp is not looking for our pity nor necessarily our understanding. How can we possibly have even a glimpse—despite all her eloquence—of what life would be like if our young child faced a cruel and early death?
Through her and her husband’s pain, however, she is reminding us of a truth that those of us whose children have lived charmed lives rarely consider:
“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.”
However there is today and
“…Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving.”
A post-script, which I swear is true. As I started writing this, a book literally fell off my bookshelf. It happens to be one of my favorites–Anne Lamott’s “Traveling Mercies: Some Reflections on Faith.”
Were I ever to meet Emily Rapp, I would love to share this with her:
“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.”