Heather Osterman-Davis is a published writer and an NF Mom. Her work has appeared in The New York Times, Slate, The Washington Post, Tin House, Creative Nonfiction, River Teeth, and McSweeney’s. Heather recently published an essay about the summer her daughter, who lives with neurofibromatosis type 1, was diagnosed with an optic pathway glioma.
When my eight-year-old daughter, Nora, started losing her sight, I didn’t even notice. After a year of battling the pandemic from the confines of our small New York City apartment, our family desperately needed to get away. Since my husband was working from home, we rented a house on a small lake in Pennsylvania for the entire summer. It was nirvana. Even my chronic fatigue, which I’d developed five years earlier, was largely in remission. Every day I’d row Nora and her brother to a small communal beach where we swam until sun, fatigue, or hunger sent us home. Halfway through the summer, my mom came to visit, and Nora, who’d just learned to swim underwater, practically dragged her to the beach. “You won’t believe what I can do,” she said. “I’ve been waiting and waiting to show you.” My mom and I watched as she took a large gulp of air before disappearing under the water, her cheeks puffed out with air.
The last morning my mom was there, she and Nora sat on the back porch reading The Black Stallion, their easy laughter drifting through the screens. Afterward, my mother pulled me aside. “Do you know she can’t see anything?” my mom asked. “She’s reading like this,” my mom said, holding her palms inches in front of her eyes, “and can barely make out the words.”
When I tested Nora, I discovered it was true. Not only could she not read the small print, but she couldn’t even make out the larger notes in her piano book. I had her try on my glasses, but it didn’t help. I peppered her with questions: “How long has this been going on? Did you notice anything?”
“I don’t know. I don’t know,” she said, again and again, until I realized my interrogation was scaring her. “Should I have known?” she whimpered.
“Of course not, Nugget,” I said, pulling her into my lap. “It might not even be serious, but I’ll call Dr. Y and find out.”
My daughter was born with neurofibromatosis type 1, a disease that can cause tumors to grow throughout the nervous system with a vast range of consequences. Among children with NF1, one of the common complications is an optic nerve glioma, a tumor that forms in or around the optic nerve. As the tumor grows, it causes a child’s eyesight to deteriorate and, if unchecked, can lead to blindness. While NF1 can occur through spontaneous mutation, it’s often inherited from a parent. Nora’s NF1 is my fault; I gave it to her and her brother, without knowing I had it.
Click here to read the rest of the essay on lindenreview.com.
