“This Boy We Made” Grapples with Illness, Racism, and the Intersection of Uncertainty and Hope

As my eldest was being born, I looked down the length of my body and watched as my midwife’s face turned from anticipatory joy to fierce determination. Only later did I learn the details: the cord was wrapped twice around the baby’s neck and cutting off the oxygen, an emergency handled with such speed I barely knew something had gone wrong. But I knew because I kept repeating, “Is it okay? Is everything okay??” Not even their assurances could convince me fully; not until that infant was in my arms would I believe the answer. Even without a moment of crisis, many parents start asking that question the day their child is born and never stop. For most, though, the intensity of that worry softens as the years roll quietly on.

For Taylor Harris, that question didn’t go away after the birth of her second child, Christopher, known as Tophs. As she recounts in This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown, Tophs was a fairly ordinary baby: underweight at birth and always small but never what anyone would call sickly. He received attentive and frequent medical care as his pediatrician kept close tabs on his slow weight gain and other small uncertainties in his development. During this time, what Harris would call the Before, the question was softer. But one morning when Tophs was twenty-two months old, he woke up silent, unable to stand or cry out as normal, uninterested in food or talk or anything but the water he couldn’t get enough of. That moment marked the start of the After, when Harris knew something was very much not okay. But what?

This memoir chronicles their attempt to answer that question through countless medical check-ups, ER visits, and evaluations by geneticists and neurologists, speech and occupational therapists – all working to solve the puzzle presented by Tophs. Around each corner, Harris must face the uncertainty, always aware that “If we are breathing, we are without escape from things we can’t know, though I’m not sure to what extent universality softens this blow.” But the unique nature of Tophs’ symptoms and the randomness of their occurrence make even the universal feel custom-ordered. At times Harris feels the uncertainty acutely, noting “our inability to grasp hold of a root cause left me raw and exposed.” At others, Harris is able to take some quiet comfort in the not knowing: “It’s quite possible that living in the liminal space between symptoms and answers has offered me too much loneliness, yes, but also space to breathe, distance from the settled grief of knowing.”

However she carries it, the question remains. What is happening with Tophs? is the steady drumbeat of this story, but the questions go beyond the clinical mystery of his disorder. They include how and when and how much to push as a Black mother of a Black child in a system known to undervalue the experiences and expertise of both. Or the question of how to address a school system that threatens to put politics before a child’s well-being. There are questions of shame or guilt, brought on by Harris’s lifelong struggle with anxiety and her fear that she is somehow responsible for Toph’s struggle. And, of course, there’s the question of how best to continue providing stability and care for Tophs and his two sisters in a time of uncertainty, both personally and nationally.

Like Harris, I graduated from UVA, and most summers I find my way back to Charlottesville. Like Harris, I revel in the beauty and contradictions of that place. But when I visit the Rotunda and try to reconcile the expanse of the Lawn with the televised images of torches and chanting white supremacists, I don’t have to watch those images play out on the steps where I got engaged, or where I took my children to play when they were small. Harris does, as a result of the events of August 11, 2017: “The day Charlottesville became shorthand for the worst, yet inevitable, fruit of seeing Black people as fractions.” I didn’t have to wrestle with my answer to a scared six-year-old’s question: “Is this going to happen every day in Charlottesville?”

“Which part? I wanted to ask. The racism, the destruction of Black neighborhoods, the hidden pockets of public housing among great wealth? Yes. But a racist rally and car crash? No.“

I don’t have to see my child’s story in the face of Elijah McClain, whose death in police custody may have happened just because he was Black and behaving oddly in public. Harris writes, “I don’t know how to tell you about the intersection of these burdens – Black and undiagnosed – in a world that is comfortable with neither.”

In fact, Harris does know how, and she has done it in This Boy We Made. With beautiful sentences and thoughtful descriptions, Harris has built a story of those intersections. She has woven together each shimmering strand: of the depth of her faith and her commitment to family; her struggles with mental health and her triumphs as a mother and as a professional; the mystery of her son’s body and her own and the relevance of their race. She brings these truths together, holding the incongruities and uncertainties in the palm of her hand, helping us all to see. There are parts of her story I can share, and there are parts I can only observe and receive with empathy, and all of them are important additions to any conversation around parenting, race, disability, and health care. Despite all their difficulties, all the hard truths explored, This Boy We Made is a story of hope and the infinitely beautiful possibilities of humanity.