by Mary Architzel Westbrook
Two years ago, my then 5-year-old son came blinking into the kitchen, complaining about his vision.
“Rub your eyes,” my husband, Roberto, suggested to Luke. “Sometimes, I feel that way in the morning, too.”
We weren’t ignoring him. It was fall, and we were busy. I had a new job. We were searching for a bigger house. The holidays were coming.
Luke persisted. A month later, an optometrist covered his right eye with a small white card. Luke struggled to name a single symbol on her chart.
“Read the letters, buddy,” I said, confused and a little embarrassed. I thought he was playing around.
At first, doctors thought it was a tumor – cancer – and Roberto and I could barely speak. We maneuvered around each other in the kitchen, without saying a word, and sat side-by-side at soccer practices, staring at our phones as the weather cooled, searching online for best-case (Roberto) and worst-case (me) scenarios.
Eventually, a retinal specialist determined it wasn’t cancer but Coats’ disease, a congenital disorder that causes vision loss or blindness, usually in just one eye. The disease is rare, affecting fewer than 200,000 people in the United States, and occurs more often in boys, according to the Jack McGovern Coats’ Disease Foundation. The average age of onset is between 6 and 8. Luke was right on track.
We learned that the blood vessels behind Luke’s left retina were leaking and had been for years. (“Think of a garden hose left on overnight,” the specialist said. “Imagine the muddy puddle it creates. That’s happening in his eye.”) He’d need regular laser surgeries to cauterize the vessels, prevent additional vision loss and save his physical eye. Because Luke’s right eye was unaffected, he’d be able to read, play sports and video games, and (one day) drive, but most of the vision in his left eye was gone already.
“This is good news,” said the specialist.
It was, given the alternative. Except, it didn’t feel like good news.
I had questions. What if the surgeries didn’t work? What if something happened to his right eye? How should we talk about things with Luke?
That last riddle, at least, Luke solved for us. From the monkey bars one afternoon, Luke asked why he’d been born with Coats’. I launched into a long explanation.
“But I was born with other special skills and talents, too, right?” he asked, hanging upside down, our noses nearly touching.
“Absolutely,” I said, wishing I’d led with that.
Roberto and I studied drawings of eyes, recalling terms we’d learned 20 years earlier in high school biology. We walked around the house, one hand placed over one eye, trying to replicate Luke’s experience. A symptom of Coats’ (and other eye diseases) is the affected eye shines yellow instead of red in dimly lit photos; we scrolled hundreds of digital pictures, intent on pinpointing exactly when the leaks had started — finding the clues we had missed.
A month after his diagnosis, Luke underwent his first laser surgery. Since then, he’s had another procedure, along with countless exams, screenings, pricks and eye drops. We purchased his first pair of glasses, then upgraded to spiffier frames that made Luke giggle and puff his chest when he caught sight of his reflection.
Not long ago, Luke was on the soccer field, playing more assertively than usual. We teased him about the improvement.
“What got into you tonight?” Roberto asked.
It was an ideal Norfolk evening — sunset, early fall.
“I think it was the sky,” said Luke, smiling. “I liked how it looked.”