In her memoir, This Boy We Made, Taylor Harris shares the story of her young son Tophs’s medical condition, a series of symptoms that his doctors can’t seem to find answers for. Harris becomes Tophs’s greatest advocate, searching for her own answers and navigating a healthcare and educational system that is not always fair to Black families. When Tophs’s doctors recommend he undergo whole exome sequencing, Harris was referred to a genetic specialist. She prayed that in looking at 20,000 of Toph’s genes they would uncover the mystery of what made him the little boy that he was. Testing did not uncover the reason behind Tophs’s medical and developmental issues, but it did reveal that he had inherited Harris’ BRCA2 gene mutation, a mutation she didn’t know that she had.
Harris’ writing is beautiful and honest, funny and sad, all at the same time. It’s a masterful story of how to enjoy life’s little moments, even when things seem so difficult and overwhelming. It’s a true lesson in learning to “live life in the middle.”
Taylor spoke openly to Karen Kramer, FORCE’s Senior Vice President of Marketing, to answer a few questions related to This Boy We Made.
This book is so beautiful. What made you want to tell this story?
Thank you. It took years of writing essays, as well as a column on genetics and mothering before I understood that Tophs’s story, our story, really deserved space in the world. In order to write a memoir, you have to believe that the story is deep enough, and in some ways, whole enough, to enter the wider world. Our story is, of course, still being lived out, but I realized I’d gathered enough notes and made enough observations. I’d looked at our journey from many angles. I had something to offer other people based on my own lived experience. At least half the battle with writing is believing you have something worth saying.
You are an amazing advocate for your son. It’s not easy navigating our healthcare system. What advice would you give others, particularly a Black person, when advocating for themselves or someone they love?
This might seem simple, but my advice is to take someone with you to appointments. It might be a spouse or doctor friend or best friend who knows you’re carrying a lot and is ready to stand up for you or just take notes for you. Take someone you trust if you can. If you can’t, try to remember you probably don’t have to make any big decisions in the moment. As long as you’re not facing a life-threatening situation, it’s okay to say, “I need to sleep on this.” I also have a small circle of Black doctors I consult. I try not to bother them with every little ear infection or bump, but I feel so strengthened and encouraged when I can text or call people I trust for advice. Appointments or emergency room visits can be overwhelming for anyone. I feel at my best when I’m not alone.
You learned of your BRCA2 mutation from genetic testing that was supposed to provide answers for your son. Instead, you learned you both had a BRCA2 gene mutation? After looking at your family medical history, did the diagnosis make any sense at all?
This is the question of the century. If you look at the pedigree my son’s fabulous genetic counselor drew up, you’ll see plenty of cancer on one side of my family. But you wouldn’t necessarily look at the cancers and think BRCA2. Does that mean there were a lot of environmental factors involved in those diagnoses? Maybe. But you have to come back to the fact that the numbers are the numbers. The risk is the risk. Even if my mom and grandmother and aunts didn’t have breast or ovarian cancer, I have a faulty gene.
It is difficult sharing this news with other family members who may also be affected. How was that process for you, and for them?
Thank the Lord for a loving spouse and big sisters. My husband, Paul, was there moments after the genetic counselor called with results. And I told my sisters and gave them permission to talk to my parents so I wouldn’t have to field questions right away. This gave me space to learn more without being responsible for relaying details.
You waited 4 years after learning of your BRCA2 mutation before deciding to have a prophylactic mastectomy. This decision is very personal and there is no right or wrong answer between opting for a surveillance protocol and a preventive mastectomy. Was there something that happened that made you decide to proceed with the surgery?
I decided on a mastectomy after prayer and fasting and reading an essay written by the late Elizabeth Wurtzel on her own breast cancer diagnosis and BRCA mutation. She wished she had been tested earlier for the mutation. Here I was with the information she’d wanted. I felt confident with my breast surgeon and no longer wanted to experience the panic of opening emails with imaging results.
You speak about mother’s guilt. How have you best learned to manage that? Do you have any words of wisdom for other mothers or fathers who share these same feelings?
I like to be honest about it. I don’t stay in that space of guilt as long as I used to, but I think it’s helpful to acknowledge it because I’m human. I, we, all pass down things we’d rather not. I also try to remember God gave me these children. He made me their mother. I don’t feel equipped and yet I feel confident I’m the best mother for them in this life. It’s a lot of “one foot in front of the other.” Just take the next step for today.
I think so many people can relate to those who talk openly about anxiety. It’s so prevalent in our world today, and in particular in people living with hereditary cancer and its risk. Why did you feel it was so important to share your own experiences with generalized anxiety disorder?
My story of mothering cannot be told without my diagnosis of Generalized Anxiety Disorder. The way my brain works shapes so much of how I exist in the world. I couldn’t write a perfect memoir, but I could write an honest and authentic one. And in order to do that, I had to bring as much of myself to the page as I could.
There are so many beautiful life lessons in your book. One of my favorites refers to learning to “live life in the middle.” Can you explain that phrase and how have you learned to live best in the gray areas of life?
I am a big fan of black-and-white thinking sometimes. Maybe it’s a strategy to feel in control. I want to know: Is this good or bad? Did I cause this result? What is the right choice? Mothering Tophs helped me to see that binaries and thresholds don’t always work or exist in the way I’d like. So the question is, if I can’t see how this situation or journey is going to end, how do I live well in the middle? For me, that means remembering, holding tightly, the moments of beauty or silliness or joy. It means making space for those darker or heavier emotions too. There’s no easy one-to-one replacement. I don’t get to drop the sadness and pick up joy just because I want to. But I can consciously acknowledge all of it, and when it feels like the weight of the world is living in my body, I can try to remember that this feeling has always passed.
Most importantly, how are you doing today? And, how is Tophs?
Tophs is joy in a little frame. He’s still into KidzBop. He likes to use his 3D printer and Nintendo Switch. He’s reading the illustrated Harry Potter series. He still delivers these quips out of nowhere. Even though he’s all bones and angles these days, I still grab him and make sure he knows I love him. And he smiles and says, “Mm hm.” And I’m just grateful this book is in the world and I’ve gotten to have incredible discussions with people about it. I’m so thankful pockets of the world have gotten to meet Tophs.