Truth is My Jam: A Conversation with Taylor Harris

This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown

by Taylor Harris

Catapult (2022); 272 pp.; $24.18 (Hardcover)

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Literary Mama first crossed paths with author Taylor Harris in 2016, when she joined the staff of the journal as editorial assistant of the profiles and reviews departments. It seems fitting, then, that the profiles department feature Harris and her debut, This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown, which was published in January 2022 by Catapult. In this heartfelt memoir, Harris focuses mainly on her search for a diagnosis for her son, Tophs, who “experienced hypoglycemia, growth failure, developmental delays, and seizures, among other symptoms” from the time he was 22 months old. Tophs is ten now, and despite tireless work by both physicians and Harris herself, a definitive diagnosis never surfaced.

Deesha Philyaw, author of The Secret Lives of Church Ladies, wrote of the book, “Mothering in the face of illness and uncertainty as a Black woman is downright Olympian. Harris’s beautiful, crisp prose drew me right into her family’s journey. Their story is heart-wrenching, hopeful, and truly unforgettable.” Courtney Maum of Literary Hub said, “As moving as it is educational about the emotional and physical repercussions of endurance, this memoir explores the stamina it takes to successfully navigate medical bureaucracy, systemic racism, and the churning seas of motherhood.” This Boy We Made was named a Most Anticipated Title of the Year for both Essence Magazine and Electric Literature, and it was listed as a January 2022 lndie Next Pick.

The book is her debut, but Harris is no stranger to publication. She’s chronicled Tophs’s condition in journals such as The Cut and Romper, and she’s served as a columnist for Time and Catapult. Her work has also been featured in Longreads, McSweeney’s, Parents, Narratively, The Washington Post, and more. Former Literary Mama editor Christina Consolino caught up with Harris to talk about moving forward in the face of a medical crisis, what the healthcare establishment can do to help parents navigate a stressful unknown, and how to help advocate for all people.

Christina Consolino: Multiple times in the book, you talk about the “comfort in the naming”: if the medical mystery can be named, then knowledge can be gained, as can a modicum of control, which leads to feeling (slightly more) powerful. But that naming didn’t happen with Tophs. Did the feeling of powerlessness surprise you, and what gave you the energy, confidence, and courage to keep moving forward?

Taylor Harris: I wasn’t so surprised by the powerlessness. I was more surprised by the entire paradigm shift I experienced. I slowly realized: doctors don’t have all the answers. Sometimes it’s not about getting to the best facility or finding the right specialist. Sometimes human beings just don’t know enough. And I think I kept going because I had to. There were days when I barely moved, as though my whole body was depressed. But eventually, the heaviness would recede, and I could move again. I had to move again—for Tophs, for my other children. Also, a kid who dances as much as Tophs makes it difficult to be still for too long.

CC: Mother’s intuition (something I truly believe in) prompted you to keep seeking help, to continue digging and researching. But you couldn’t fix anything, which of course is something that many mothers (and parents in general) try to do. What can the medical establishment do to help parents in this situation?

TH: I think Tophs’s genetic counselor, Shelley, is a perfect example of how to share medical knowledge that is available but also be present and honest when there aren’t answers. It’s so important that families don’t feel forgotten. Shelley has always been an email away and has never made me feel ashamed for asking questions about various studies or new symptoms. And when new research comes out, she’ll still check in to see about possible implications for Tophs. I also appreciate those who’ve welcomed second or third opinions, those open to any ideas that could help our son. We’ve been to Cleveland Clinic and Children’s Hospital of Philadelphia and the University of Virginia. It’s great that Tophs has had a team of people involved in his care.

CC: Tophs is your second child, and as parents with multiple children, we often think because we’ve been through the experience before, we’re going to be okay, that nothing should topple us. But then, something like a medical crisis presents, and we’re thrust into a world we never knew, one we grapple to understand. Your husband, Paul, has been an enormous supporter and true partner since the beginning. Do you have any tips for those who might feel more alone in their journey?

TH: I never want someone to feel like there’s only one way to approach difficult doctor’s appointments or IEP meetings. I know that when I feel overwhelmed, I tend to shut down or acquiesce. So my advice to other parents tends to come from my own reaction to tough circumstances. Some families might need a lawyer or mediator or maybe they just need the time and space to research on their own. But I don’t think you can lose by having a spouse or close friend or advocate with you in those hospital or conference rooms. I like to have someone I trust by my side because then I think it’s harder for others in positions of power to gaslight me. And if you have to go it alone, remember you can always say, “I need a minute to process that.” Most times, unless it’s a medical emergency, you don’t have to give an answer or sign a paper on the spot. Sometimes, time is a friend.

CC: This book isn’t simply about a diagnosis for Tophs. It covers the nuances of motherhood, your own struggle with anxiety, the revelation that you have the BRCA mutation, your eventual double mastectomy, and racial disparities in the United States, all of which you convey with grace, honesty, and at times humor. Is this the book you set out to write, or did the breadth of it arise organically? How difficult was it to share a story that often bared your soul on so many levels?

TH: Thanks for asking. I think it is the book I set out to write, and yet I didn’t quite know what it would look like when I started. I knew there was this layered mystery I wanted to share with the world, and I knew I wouldn’t be able to give readers the answer I’d initially been looking for (a diagnosis). But what if the story still deserved space, and what if it could reach others whose lives weren’t filled with clean-cut answers? These sorts of questions fuel me; that curiosity keeps me writing. Our lives and perspectives and questions—whether fiction or poetry or memoir, this is the stuff we use to make art. In that way, it was easy to bare my soul. It’s much harder to find a great structure, to settle on the right words and pacing and on and on. But telling the truth—that is my jam.

CC: Let’s tackle one of the racial disparities you touch on both in the book and in an article for Time—the education of white versus Black children, even those who come from middle-class, well-educated families. After a meeting with school administrators about what Tophs needs, you wrote: “I’m also a Black mother advocating for my Black son in a room full of people who don’t look like us.” What can your peers, readers, and everyday citizens do to help you advocate not only for your son but for every child, regardless of skin color?

TH: In my experience, those who know about these disparities and are engaged in anti-racist education are the most helpful. Others are working hard to whitewash history and school libraries. We are really going to have to fight to tell the truth about national and systemic oppression. And anyone who isn’t engaged in the fight, at the very least needs to listen and sit with the experiences of Black and brown kids and their families.

CC: Toward the end of the book, you referenced that same school meeting, saying, “I had done something much more possible and impossible: I had tried to make Tophs seen.” In telling Tophs’s story, you’ve made him “seen.” Is it enough for you?

TH: I feel really good about this. It’s so hard to know how a book will do once it’s out in the world. But when it’s all said and done, I feel really good about the way I told my beautiful boy’s story as it relates to mine.

CC: Prior to writing your full-length memoir, you shared some of these experiences with readers in a column for Catapult. What was your writing process in moving from column to book, and how did you so artfully weave your own story with that of your son?

TH: Writing that column, “What Genes Can’t Tell Us,” helped me map out the various aspects of mothering Tophs. I love columns because they give you space to take meaningful deep dives into an event or emotion or detail that might get left out of a single, personal essay on the topic. For me, the next step after the column was taking a Catapult class on book proposals, taught by the brilliant and generous Nicole Chung. Nicole has championed my work from day one, and she eventually connected me with her editor, Julie Buntin. When I read Julie’s notes on my proposal, I knew she was the one. I didn’t care if she was operating a one-woman publishing house out of a charcoal grill in her backyard. Thankfully, she worked for Catapult, which has been a writing home for me. Then came the real work.

I gathered boxes of medical records—both mine and Tophs’s—and began to write out every big event or milestone I wanted to include in the memoir. I wrote those events on notecards and taped them to the wall. When my husband and kids surprised me by painting a wall of my office with dry erase paint, a whole new world opened up. I could lay out each piece of the narrative, toggling back and forth between my life and Tophs’s. Believe me, it didn’t always work seamlessly. I would have forgiven Julie for burning some of those drafts on her grill. But having an insightful editor and being able to see all the elements on my wall gave me the confidence and space to keep working and rearranging until I could develop a narrative that truly represented my life as Tophs’s mom.

CC: Tophs turned ten this year, and what a decade you both (and your family) have had! Despite the lack of a definitive diagnosis, how is he doing? How are you? Does he have any idea how much of a warrior his mother is?

TH: Tophs is still the kid who loves to dance and watch TV ads. He’s a big fan of Alexa. He’s also got a big heart and is constantly thinking of businesses that could help those in need. When we pass someone holding up a sign for food or money on the street, he says, “Can we help them? Can you imagine what that must feel like?” I’m so thankful for his heart and the way he sees the world. He’s also bigger now and a bit harder to cuddle with. He’s in this preteen stage, but I can still make him giggle, and I love to see that dimple when he does. I think he knows I love him a lot, and maybe that’s enough for both of us some days.

CC: What’s next for you?

TH: We just moved to Richmond, Virginia, so I am settling in and getting to know the neighborhood, as well as the best ice cream spots! I’ll continue to freelance and teach a course in personal essay and memoir writing.