From The Life I Couldn’t See Yet: A Mother, a Son, and the Future Beyond a Rare Diagnosis

—from The Life I Couldn't See Yet: A Mother, a Son, and the Future Beyond a Rare Diagnosis, by Lisa Pleasants

By the last year of middle school, I had spent years asking some version of the same question: What can he do, and what can't he do? The question sounds practical. It rarely felt practical when I was the one answering it.

XLRS carried a greater risk of retinal complications, and that knowledge had lived in the back of my mind since Brendon was a baby. A mother can turn almost anything into a risk assessment once she has been given a medical reason to worry. Football meant the possibility of a blow to the head. No. Baseball presented a different problem. I already knew that a ball coming toward him could disappear in part of his visual field. A hard baseball moving fast was not a risk I was comfortable taking. No again.

Karate had been one of our compromises. He had started years earlier, when I was looking for something physical and challenging that did not feel as unpredictable as a field full of flying balls. I am using the word predictable generously. Watching your child spar while trying not to react to every contact is its own exercise in restraint. Brendon kept at it. One of the lessons his instructors repeated was simple: never, ever give up. I repeated it too. After five years, he earned his black belt.

There is one part of that accomplishment I still hate: I missed the black-belt ceremony.

For five years I had been the one driving him to karate: practice after work, practice after school, practice squeezed into the same overloaded calendar as everything else. Then the moment all of that work led to finally arrived, and it was the exact same day that I was supposed to walk the stage to get my Executive MBA degree. The choice was hard, but I chose my own graduation. I still hate that I had to choose at all.

Brendon and I had talked about the conflict beforehand, and he knew how hard I had worked too. He had no problem with me going to my graduation. The guilt was mine, and it was not guilt about walking across my own stage. It was guilt that I could not be at his too. By then, he was very used to the village that helped raise him. My parents and Lance came to my MBA ceremony, and his paternal family went to his black-belt ceremony. In fact, the lesson karate had drilled into him about never, ever giving up made the choice feel almost mandatory. Both of us had worked too hard not to go to our own finish lines.

My career gave us financial security and opened doors for me, but it also asked for travel, long days, and sometimes choices I wished I did not have to make. Brendon’s village helped cover the gap, as they had so many times before. Brendon earned the belt whether I was in the room or not. I was proud of him and still hate that after five years of getting him there, I missed the finale. It was another reminder that no matter how hard I tried, I could not be present for every important moment.

Brendon had already shown me through karate that he could learn his limits, adapt, and persist without me hovering over every second. Soon he would ask me to trust that lesson in a way that felt much less controlled.

Near the end of middle school, Brendon decided he wanted to ride his bike to school. The school was only about two miles away. He had been walking to the bus stop, but the bike represented something different. It represented freedom. To me, it also represented a busy street, uneven sidewalks, cars, driveways, and every other possible hazard my imagination could produce in about thirty seconds. My first instinct was no.

Brendon believed he could do it. He told me he could see well enough to know when cars were coming. He had been living inside his own visual field his entire life. He knew how he moved through the neighborhood. He was getting older, and I had to begin allowing the person with the visual impairment to have an opinion about what he could safely do. So I said yes.

For about six months, everything was fine. Then my phone rang. "Mom, I can't move my arm. I got into an accident."

Explore the full story in The Life I Couldn't See Yet: A Mother, a Son, and the Future Beyond a Rare Diagnosis, available through Amazon.