Last January my nearly two-decades-long odyssey through pediatric ICUs and round-the-clock caregiving ended when my disabled 18-year-old son died of a septic infection that had manifested just a few hours earlier, when his face paled and his blood vessels locked down, cherry-red threads beneath paper-white skin. This subsequent year has been a paradigm shift for my wife and two other teenagers, against the backdrop of a pandemic that surges like a tide: gone are the nurses and therapists, the bleeping monitors and 911 calls, swept into the vault of memory.
Which is why I nodded along as I read “This Boy We Made,” Taylor Harris’s affecting, razor-sharp debut. Here she tells the journey of her son, Christopher, nicknamed “Tophs,” from confusing doctor appointments during his infancy to his uneasy equilibrium as an active, differently-abled boy. “This Boy We Made” blows up the stale formulas of trauma memoir, implicating us in Harris’s most intimate and terrifying moments, and those of her family, with candor and cool precision. Her book also serves as an allegory of sorts: a Black woman grapples with enduring racial disparities in health practices and outcomes, the stark divides both in and out of clinical settings.
Harris toggles between Tophs’s story and her own; each enriches the other. She was raised in Columbus, Ohio, the youngest of three daughters in an aspirational African American family; throughout childhood and adolescence she struggled with anxiety, and was eventually prescribed a serotonin-uptake inhibitor, or SSRI, to help regulate her mental health. She speaks to her own condition with a clarity and confidence that will resonate with readers.
A straight-A student and star tennis player, Harris won a full scholarship to the University of Virginia, where as an undergraduate she met her husband, Paul. As devout Christians they shared an ardent faith. After he landed a job as a professor at UVA, they slipped easily into Charlottesville’s seductive rhythms. Harris gave birth first to a daughter, Eliot, and then to her son.
Tophs’s symptoms manifested early: chronic low weight, perilous drops in blood-sugar levels, language delays. Harris deftly draws a line between a Before and an After — when she grasps there’s something wrong with her son, she reconsiders earlier episodes, as when she and Paul were shopping in a store owned by acquaintances. Her son’s foot turned a bright blue, then “within minutes, Tophs’s foot had changed back to its healthy, reddish-brown tone, and we all shrugged it off. Taken one at a time, each symptom could seem trivial, certainly not life threatening. Taken as a whole, it felt like playing Twister on a Jackson Pollock painting.”
The cascade of crises plunged the family deeper into referrals and tests, even short stays in the UVA Children’s Hospital. Harris conjures a psychic dreamscape familiar to those of us who are her fellow travelers: “There’s a twilight-zone aura to a hospital at night — an inner world of neon overhead lights and monitors running on energy that the sleepy outside world has turned off. Maybe I’d made it all up, the night-shift nurse and her quick phone call merely ghosts of my disoriented mind.”
Although Tophs’s health ebbed and flowed, he was charming and outgoing, if neurodivergent. The Harrises were eventually steered to a team of geneticists; whole-exome sequencing (WES) unearthed some surprising results, one with far-ranging implications. “This Boy We Made” navigates these twists with acumen and vivid suspense, even as Harris exposes the welter of her emotions.
The book also plumbs a less visible kind of malady: the unique obstacles African Americans confront in our medical infrastructure. Their educational and professional accomplishments can’t protect them from the institutional racism they encounter; the Harrises contend with the dismissive tones and lack of urgency white doctors often bring into the most consequential of conversations. As Harris writes of her husband: “A Black male, even one with a crisp goatee and blazer, must inquire in the most peculiar way, his nonverbal cues and tone alternating between calm and concern. He must not offend. He must show his spine. He must not offend.”
Harris’s bucolic college town emerges into the national limelight abruptly as white supremacists parade through the streets of Charlottesville; one mows down a counter-protester, Heather Heyer, killing her. This shakes Harris to her core. She projects her fears onto her son’s future: “Imagine a young Black man, who isn’t an auditory processor, who doesn’t always know where his body is in space, who would stand in the middle of the road if he thought someone might need help, who isn’t diabetic but is hypoglycemic, who will become clammy and heavy as stone if he misses a meal, having a run-in with a police officer. Is he distracted by the flashing lights?” One can’t help but feel a Black parent’s primal dread in the gut.
“This Boy We Made” not only reflects broader social reckonings, it is itself a reckoning, illuminating inequities entrenched not only within our justice system, but also within seemingly neutral institutions, such as health care. Mostly, it’s a scrupulous, moving read that deserves a wide audience, one inspired to push for change in a plethora of arenas.
THIS BOY WE MADE: A Memoir of Motherhood, Genetics, and Facing the Unknown
By Taylor Harris
Catapult, 272 pp., $26
Hamilton Cain is contributing books editor at Oprah Daily and the author of “This Boy’s Faith: Notes from a Southern Baptist Upbringing.” He lives with his family in Brooklyn, N.Y.