Amid medical mystery, mother sees beauty in son
Photo of Taylor Harris (right) with her son Tophs
By Louise Kinross
This Boy We Made: A Memoir of Motherhood, Genetics, and Facing The Unknown is a fascinating look at parenting a child with undiagnosed health problems when you're Black and live in the United States. Authored by writer Taylor Harris, it's an important addition to a canon of parenting books primarily written by white mothers.
"Publishing is still dominated by whites, especially white men, though certainly many Black writers are thriving at their craft," says Taylor, who recently moved to Pennsylvania from Virginia with husband Paul, a pastor and counselling professor, and three children. "If you're going to talk about something like disability, maybe it seems like it's easier to sell when it's from the lens of a white person. What I brought to this book, which I can speak on, is race, mental health issues and genetics."
Taylor recounts raising her son Tophs (short for Christopher), who as a young child has dangerously low blood sugar, slow growth and developmental delays. He later develops seizures. The origin of his medical problems puzzles specialists, even after whole exome sequencing. "Is it horrible to want your child to have something?" she writes.
The book begins with a dream where Taylor holds Tophs in a pool and inadvertently lets go of his wrists. One interpretation is the guilt she feels for his undiagnosed problems. "What did I do—or not do?" she writes.
Taylor, who has an anxiety disorder, ruminates over her son's early history to pinpoint something that contributed to his condition. "If God had designed my son and allowed him to emerge from my womb this way, I knew I could find peace and joy in mothering him," she writes. "I already had. If, however, I had hurt or changed the human God had designed, my guilt would erode any peace."
This Boy We Made explores what it's like for a Black family in America to advocate for their child. In one scene, medical staff lose a urine sample that was to confirm whether Tophs had ketotic hypoglycemia, and don't account for the mistake.
"In this book, whether it's an IEP or a hospital appointment, we carry a burden of questioning," Taylor says. "We're trying to size up the situation. Is our care different because of the way we look and because of the way we're perceived? We weren't wondering 'Did they lose it because we're Black?' It was the way they almost brushed it under the rug. You're waiting for someone to acknowledge that they made a mistake and they'll do whatever they can to fix it, and we didn't get that. We live in a college town. If one of the white professors had been the parent, would they have gotten away with that?"
Taylor writes about how her husband Paul, a professor, is put in an impossible situation where he must both "not offend" and "show his spine." "A Black male, even one with a crisp goatee and blazer, must inquire in the most peculiar way," she writes.
The uncertainty and life-threatening nature of Toph's problems call into question some of Taylor's childhood beliefs. "I grew up with a deep belief that if I made the right choices; if I finished my homework and studied for tests; if I followed the syllabus, or the Ten Commandments, I would be more than okay," she writes. "I would be a success, full stop.
"I don't blame myself for believing that," she says now. "It was a really helpful belief for me in some sense because it did help me with anxiety. It helped me to understand the miraculous aspect of faith, which I still don't doubt.
"I think we have this mixed bag here in America. It's easy to mix up our religious beliefs with capitalism or meritocracy, with this idea that if you work hard and you pull yourself up, you can be a great success. It extends from our belief that Jesus died on the cross and was raised on the third day. It's really prickly in there for me. In my early days as a Christian, I thought that being close to God or believing or doing the right thing meant I could get rid of my fear. And then to move into this space where it's almost right to fear for my son and not just irrational? I had to step back and say 'So maybe I didn't have the full picture here and maybe a lack of fear isn't the only sign or proof that Jesus is with me.'
"You'll hear from Christians, and they're well-meaning, who say 'We're going to pray you through this' and 'We're going to pray that out of you.' I've heard stories of people who are in a wheelchair or walker and Christians will come up, without knowing them, and say basically 'Can I pray for you to be healed?' and that's so difficult. There are these amazing stories in the Bible about healing. I'm not saying just throw those out. I am saying that knowing Christ and being loved by God doesn't only happen in the absence of illness or disability or neurodivergence. The God I know and love is in there with us. He's not waiting until everything is fine."
Early on, Taylor identifies some teachers and therapists who empower Tophs and his family. "I talk about Paige, who was one of his first teachers and I still text her all the time," she says. "Paige is an eternal optimist with a Southern drawn that comes out when she gets comfortable. She almost smiles with every word. But she never brushed off our concerns. If I brought a concern to her, she took that seriously.
"Anita was a therapist who really had a gift for looking outside the box and saying 'How can we team up or run things throughout the day so it works for him within his preschool day? I'll spin him on a swing or try visual flash cards to see if it helps.' I don't expect that from every educator. It makes a difference when an educator takes the time to learn your child."
There are some exquisite passages in This Boy We Made where Taylor writes about how Tophs creates his own rich world with My Little Ponies characters. "Alone but befriended in this world of figurines, Tophs directs the magic and sets the scenes."
In some ways the experience echoes Ron Suskind's book Life, Animated, where he details how his autistic son Owen's love of Disney characters enabled the family to communicate with him in a new way. In both cases, the families follow what the child finds meaningful, and don't get hung up on whether they're involved in "age-appropriate" activities.
'I still struggle with Type A perfectionism," Taylor says. "There's still a part of me, somewhere deep down in the recesses of me, that thinks a great life is maybe going to Princeton or being a Rhodes Scholar. I want to be truthful and say that's something I still have to deal with within myself. Part of it is recognizing the ways that Tophs is brilliant and that the term 'outlier' can be beautiful, even though it can be hard sometimes. To this day, Tophs builds structures with magnetic tiles that I never could. In the book I write about how he builds stables for his ponies that are multi-level and almost like palaces or houses. Sometimes he'll have seizures and it hits me in the gut watching him seize. And I think 'Screw all the worrying about getting As or going to college. I just want this kid to be happy.'"
Taylor says the emotional toll of writing the book was heavier than she anticipated. "There were days when I would sit down to write a scene, particularly about seizures, or getting medical results that were difficult, and I could feel that weight again in my body. I'd only write a sentence or two and think you know what, I need to sit in this and then come back to it. There's something about seeing your child in a fragile state that always brings you to your knees."
Taylor had two aims in writing the book. "I really wanted it, on some level, to read as a love letter to my son," she says. "I hope one day when he reads it, that's the overall feeling he gets. The second thing was I wanted readers to have a place to really land and sit with these questions. If you imagine a park, it's a safe place where you pull up and have a seat on the bench beside me."
Today, Tophs is nine and in Grade 4. Medication controls his seizures, but his condition remains a mystery. "He's so fun," Taylor says. "His Karaoke machine is still one of his favourite gifts. He plays the viola, but is interested in playing the clarinet. Someone gave him a sewing machine and he wants to learn to sew. I could see him being a clothing designer, but neither of his parents knows how to run a sewing machine, so he's watching YouTube videos to learn.
"His teacher tells us on a conference 'I know this is trite, but I want to tell you that his smile really changes the classroom.' His doctor said 'He's got something, we just don't know what it is' and I think 'Yes, he's got something.'"
Taylor Harris recently had this piece published in The New York Times: After a Mastectomy, Moving Between Gratitude and Grief. Like this story? Sign up for our monthly e-letter. You'll get family stories and expert advice on raising children with disabilities; interviews with disabled activists; and disability news + new books: https://bit.ly/3IIK5Qo
