On the eve of my dead son’s birthday, in one of those eerie, grace-filled coincidences, I read an essay that took my breath away.
The essay in the New York Times is called “Notes from a Dragon Mom.” It is written by the mother of a child with Tay-Sachs disease, and it is about what it’s like to parent a terminally ill child.
“The mothers and fathers of terminally ill children are something else entirely,” writes Emily Rapp. “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.”
I was a dragon parent. My third child, Aidan, was diagnosed with lissencephaly on Christmas Eve of 1995, when he was two months old. Lissencephaly is a severe brain malformation; there is nothing that can be done to fix it. In that instant of seeing his CT scan, the entire world changed. It wasn’t about milestones and preschool and college and possibilities anymore. It was about whether he would ever smile (he did), let alone walk or talk (he didn’t). We stopped thinking about playgrounds and playdates, and started thinking about how long we would have with him, and what that time would be like.
Dragon parents, Rapp writes, are scary to other parents. I remember that so clearly, even though Aidan died fifteen years ago. We tried to make life normal for our two preschool-aged children, but it was anything but normal to be running for the suction machine or managing seizures in the midst of making dinner or playing with dolls. Our life was as different as Aidan was different from other babies at the playground or grocery store. Nobody knew what to say to us or do for us, so they mostly disappeared. It was lonely.
I remember one afternoon at a museum on Zack’s fourth birthday; I’d taken the kids to celebrate. Aidan started seizing and wasn’t breathing well; he was starting to turn blue. I looked around and wished that someone, anyone, could help me. But there was nobody—there never seemed to be anybody—and I knew what to do, so the kids and I went into the handicapped bathroom and I gave Aidan some rectal valium to stop the seizures—and then we went back out to the museum, where the children played and I watched Aidan’s breathing, fighting back tears.
It is horrible, being a dragon parent—and at the same time, it is deeply beautiful. Life is more complicated, with medication regimens and medical equipment; just leaving the house to buy milk requires extensive planning and some remarkably good luck. But life with a terminally ill child is also exquisitely simple. There is so much that doesn’t matter anymore when your child is going to die. Just holding them matters. Seeing them smile is everything. That my other children and my husband were healthy became nothing shy of a miracle for which I could never, will never, be grateful enough.
That’s what we lose sight of, I think, in the hustle and bustle of our day-to-day lives as parents. We get so caught up worrying about their grades and their behavior and activities and future that it’s really easy to lose sight of the fact that our children are, fundamentally and forever, a gift to us. As Rapp writes at the end of her essay,
“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 my child today. Now. In fact, for any parent, anywhere, that’s all there is.”
Last night, as we do every year, we celebrated Aidan’s birthday. We walked to the cemetery and set loose balloons, watching them wind their way through the sky on their way to Heaven. The kids played on the rock ledge behind Aidan’s grave, and we laughed on our way back to the house. There was some sadness, but mostly joy.
That’s what we dragon parents learn: how to find joy. We learn it the hard way, and it never fully erases the sadness, but we learn to see it and take it wherever we can. We live the rest of our lives fiercely, loyally, and full of love.