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A mother’s quest for genetic answers about her son’s mysterious ailments

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It was a seemingly ordinary, picturesque day in Virginia, with clean, dry air and the sun flickering through the trees. Taylor Harris rolled into her parking spot at the bottom of a hill and unlatched her son from his car seat. As she cradled 2-year-old Christopher and carried him into the house, Harris, a writer, wife and mom, became overwhelmed by the calm within her.

“As I moved up the stairs, I couldn’t deny the peace falling in thin quilts over me,” she recalls in her new book, “This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown.” Harris would come to characterize the memory as a pivotal one from her “before” days of motherhood — the time in her life when she could be simply present without vigilant worry for her son.

“This Boy We Made” describes her relentless, twisting quest to understand the genetics of why the gentle, dancing toddler “Tophs,” with his chubby cheeks, comes to experience a maddening assortment of maladies and challenges over his young life. Some are benign, but some are serious — “the morning when he awoke but didn’t stir, in the haunting way that turns a real child into a doll,” as well as stimming (repetitive actions and movements), hypoglycemia (dangerously low blood sugar) and, perhaps most disconcerting, expressive speech delay and the associated difficulty communicating his wants and needs. The book details the intricacies of how the Harrises, including Tophs’s older sister, Eliot, and father, Paul, navigate the medical unknowns — along with some unexpected genetic findings — and how it all impacts the family psychologically and spiritually.

At times, the memoir is a cascade of late-night and early-morning scares, punctuated by Harris asking her husband, then a professor at the University of Virginia, “Should we take him?” followed by the panicked drive to the hospital. Throughout, Harris’s prose hugs readers like lifelong confidants, transforming them into inner-circle champions of her graceful fight. She examines her disquieting experience of feeling stuck en route to some elusive destination. Families in such rare-disease situations face the inescapable conundrum of how they can best care for a loved one whose medical treatment and diagnosis, whose educational opportunities, and whose life trajectory are so fraught with the unknown.

Interwoven is Harris’s acute understanding of how science and genetics can unlock a vital medical finding as surely as they can seem confounding along the way. She and her husband consented to testing as a way of gaining clues to Tophs’s condition, in the process uncovering potentially lifesaving information about Harris’s own genetic makeup, which she finds she shares with other family members. Meanwhile, Tophs remains a mystifying case whose growing medical files feature unsatisfying or partial findings from multiple corners, including from a developmental pediatrician, a cardiologist, an endocrinologist and a gastroenterologist.

The memoir dedicates important space to the numbing bureaucracy that often accompanies medical visits, particularly as seen through the eyes of a Black woman in the South. Having moved often within White neighborhoods and educational institutions around her home in Charlottesville, Harris is unflinching about her periodic unease in those quarters.

She remembers one trial with Tophs, whose essential lab results were lost by hospital staff without an explanation or apology. “We could be gracious, yes, but as a Black person receiving medical care, the world left no room for humility or deference.” Paul, ever the even-keeled force in such situations, took those practitioners quietly to the mat, careful not to offend but to make his point. “A Black male,” she writes, “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.”

Even amid such painful episodes, Harris is generous with relaying mirthful ones, including the time she left Tophs alone at her computer while she dressed. Feeling joyful when she heard him gleefully yell multiple times, “There we go!,” she later found several email notifications of online purchases. “I saw items I had no words for: two leather Rebecca Minkoff cross-body handbags — one white with tassels, the other turquoise — totaling $370.33.”

Harris also brings humor to bear in moments of great adversity — for example, when she and Paul have to fight for Tophs’s right to certain educational opportunities when he switches schools. “Nothing brings us together quite like a special education meeting,” she jokes of the way the two joined forces to triumph over various administrators who sought to limit the help Tophs received at school. Indeed, the memoir focuses frequently on the strength she derives from Paul and their love for each other. After one tough meeting with a school board, Harris recalls, they debriefed after a movie on date night. “We spoke a language built by rage and love, sacred, designed just for us, just for this time, just for two kids who fell in love and grew up trying to live right.”

One of the most trenchant moments in the book comes when Harris, whose strong faith features prominently, told Tophs and Eliot the story of Easter. She went through the events of Jesus’s death, the tomb and its emptiness. Shortly thereafter, Harris recalls, Tophs responded with something seemingly unrelated to the story, which she felt she had conveyed so thoroughly. “Tophs, did you hear anything I just said?”

“Mommy, it goes in his mind,” his sister replied.

Sharing that memory perfectly encapsulates how deft Harris is in building Tophs’s multidimensional story. By including it she conveys that how he processes and communicates information ultimately holds far less significance for her than the fact that he is present in their lives and taking it all in, in his own way. “This is the cycle with Tophs,” she explains, “the ebb and flow of mothering a gift unknown. He’s going to be okay, I tell myself; it’s just the how that I don’t know.”

Karen Iris Tucker is a Brooklyn-based journalist who writes primarily about health, genetics and cultural politics.

THIS BOY WE MADE

A Memoir of Motherhood, Genetics, and Facing the Unknown

By Taylor Harris.

Catapult. 272 pp. $26

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