Family

Who Gets to Tell the Story of a Child’s Illness?

When I started writing a book about my daughter’s bone marrow transplant, I didn’t question my right to describe my kids in print. Now I do.

Natalie Matthews-Ramo

Natalie Matthews-Ramo

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Every so often, my son threatens to sue me. Well not exactly threatens but implies that he could, if he wanted to. Whether he wants to remains mercifully unclear. The issue at hand—the basis for his supposed suit—is this: I’ve written a book about the experience our family had when our daughter was born sick, got sicker still, and was then beautifully cured with a bone marrow transplant (compliments of his cord blood stem cells). In the book, I describe Gabriel as an infant and a toddler: how he would squeeze his sister’s arm and say, “I’m enjoying you!”; his devotion to cake; his fraught relationship with trees, “the trees don’t yike me”; his profound bond with a pair of bee motif rain boots, which he wore to bed for six months. I’ve drawn a portrait of him. Projected an image of Gabriel, age 2, into the minds of readers.

Do I have a right to do that? Honestly, I didn’t question my right to describe my children when I started the book. I just wrote. But sometimes we make decisions, even really big, important decisions, without acknowledging that they are decisions. For instance, this book I’ve written is also about how—when I became unexpectedly pregnant by a man I loved and who loved me but did not want children—I chose to continue the pregnancy. At the time, I did not experience this as a choice; I simply did what I wanted to do (and had always said I would do) and went right on being pregnant. But it was a choice—the biggest one I’d made in thirty-three years, to invite another life onto Earth.

It was only after the fact—after my pregnancy was well underway and I was a waddling, sad sack wondering how to make single parenthood work—that I reminded myself I’d chosen this life. It was mine to make good. In the end, this choice was softened by my mate’s gradual but complete return to partnership, his full-hearted embrace of parenting. Writing about this time in the book was hard, but I had my partner’s help in crafting a portrait of him, and of our rupture and return to one another. In contrast to this collaboration, I did not enlist my kids’ help or approval. I just wrote; skipping over the fact that I was deciding to tell a very intimate story about them, without their consent. And now my job is to receive the rolling wave of their reactions.

Our son, Gabe, now 14, read the book in one sitting. He felt immediately ambivalent. “Why did you make such a big deal out of those stupid bee boots?” he asked, referring to my multiple mentions of how he slept in them. The teenager Gabe has become loves Tupac (mostly for his politics), and playing the sax, and the Mets, even when they’re losing. He roots for underdogs of all kinds. But he does not particularly like being compressed into two dimensions. He’d rather remain anonymous. “People are going to think of me as ‘baby Gabe’ forever,” he said.

Meanwhile our daughter, Amelia, 16, read the book in fits and starts, over the course of months. She’d dip in, dip out. I was never sure what she’d read, or when. But eventually she told me she’d read it all. She plays things close to the vest; temperamentally, she’s not one to lead with upset or frustration, so it’s hard to tell how the book, or the image of her within it, truly landed. She seemed pleased but in a distant way: “It’s hard for me to relate to that girl as me,” she said. She considers herself many steps removed from the sick child in the book, a copy of a copy of a copy. On the page, a version of her 3-year-old self endures incredibly hard things, things that she’ll be enduring for all time in written form, while her true self is light-years beyond that era—healthy, vibrant, essentially unbothered. She doesn’t even go by the same name as the little girl I describe. In the book, she’s Gracie. That was what we called her. But at age 7, the age of reason, of self-assertion, she decided she was Amelia. Does the image of Gracie, struggling to get well, impinge (even a little) on Amelia’s ability to be anyone she’d like? I hope not, but it’s hard to be sure.

I do know that she does more than suffer in the book. She rides a swaybacked pony and impersonates Harpo Marx. She rescues her brother from a black widow spider and invents a language—nangi is water, pasta is bas. In short, she’s cute. Which raises this terrifying prospect: Is it exploitive to draw on your kids’ cuteness as material? Nine out of 10 small kids are cute. But they are cute people, with feelings and thoughts hard to fully divine, impossible to represent with accuracy. In the book, I’ve created a picture of my kids that I want to be real, believe to be real. But it is actually my invention. Now that they are teenagers, how cute they once were is not the main topic they’d like publicly examined.

As the book comes out and my kids’ responses to it evolve, I am living with my decision to write about their early lives. And through their reactions, I’m finally seeing it for the choice it was. I told our family’s story with a queasy mix of conflicting impulses and emotions: an underlying sense that what our daughter went through was also what we went through, and thus as much my story to tell as hers; a certainty that, though I share her story, her suffering was ultimately hers alone (I couldn’t bear it for her then, and as much as I want to, I’ll never entirely fathom it now); a wish to capture, without falsely ennobling, the grit and inventive ownership with which she answered trauma and the antic humor our son breathed into the darkest time we’ve known.

I still don’t know who this story belongs to. The sick kid? Her sibling? Us, the parents? Who has the right to tell it, and with that right, comes what set of responsibilities? You’d think I would have worked these questions out ahead of time, or in the writing. And to some extent I did, in conversation with my husband. We read through the manuscript line by line, sometimes word by word, until he was satisfied with his portrayal, and I was satisfied with his portrayal, and we’d agreed on all the major events. With my kids, I did no such thing. I was writing about a time they could not remember and thus couldn’t verify or clarify. I was working to bring alive a version of them that existed only in my memory, as their mother. There was no way for the grown version of themselves to be collaborators in drawing that portrait; it resides outside (for the most part) of their own recollection.

The memories I encoded in the book have and will color my kids’ memories, overlay the little they do recall. Our daughter says she now understands her brother’s misery when we had to leave him to care for her in the hospital. “I feel for the little guy,” she said. Igniting retroactive empathy, in a teenager no less, feels like one reason to write a book. Still, she doesn’t like the idea of her teachers, or friends, or anyone learning more about her history than she feels inclined to share. And yet, the book is out. We’re in a sticky thicket, feeling our way through. There are more than two sides, of course; a story can’t be casually flipped over, like an old LP. There are infinite points of view, infinite ways to recast the events. I hope, someday, my kids tell their own version of this one, in any form they choose: sax solo, puppetry, Twitter thread, prose poem, Claymation. Just tell it. Conjure yourselves out of thin air, in whatever form you’d like to appear.