As Jasper learns to ride a bike, it is hard not to think back to those early days in 2011 when he was diagnosed with Cortical Visual Impairment. He was about a week old when his neurologist gave me the diagnosis, “Cortical Blindness” she called it. She recommended registering him with Services for the Blind and added that “color vision is usually intact.” She continued, because my son’s visual impairment involved the brain, and not the eye – there was nothing wrong with my son’s eyes – there was nothing that could be done to improve his vision.
In a previous life, I raced bikes. And rode bikes. All the time, everywhere, it was my passion, it was all I wanted to do. When you are expecting a child, it is normal to fantasize about sharing your life with your child, and all the things you will do together. In my world, that included riding a bike. He would start off with a mounted child seat or a bike trailer, then maybe a trail-a-bike, and eventually a real bike – riding alongside me on his own, untethered, no longer attached to mom. But hearing the word blindness stops you in your tracks. Or at least makes you start gently squeezing the hand brake.
In Seattle, May is bike to work month, so Jasper has been biking to school in the morning. School is only about a block away from home, pretty short for a bike commute, so we leave early and Jasper rides around on the empty baseball field nearby. This strategy has a few advantages, one being dirt. Falling on dirt is much nicer than falling on pavement. Jasper rides laps around the infield, navigating the visual cues of white bases, first and third base foul lines, and the border where pale brown dirt and green grass meet at the outfield. “I’m a FAST boy!” he calls out to me.
Over the last six years, I have struggled with telling people that my son is visually impaired, especially in those first years when it was still hard to say words like visually impaired, delayed, infant stroke, seizure. But watching Jasper on his bike this morning – as people walking by looked over at him – I wanted to shout: “Do you see my son riding his bike? Do you know that he is visually impaired?? Do you see my son riding his bike?”