The part I remember most on the drive to the emergency dentist was that my mom let me borrow her fuschia down jacket. I was super sweaty and starting to get really cold, so she took it off and handed it over. Never in my life could I remember my mom letting me wear something of hers, or at least something of hers she ever planned to wear again, so when she handed me the jacket, I knew I must look pretty bad.
I had just finished a bike race, and I’d been pushing myself to the very end, trying to outsprint another racer to the line. After crossing the finish I missed the fact that the course turned, and proceeded straight ahead, coasting at a high speed, straight into one of the metal barricades ringing the course. The metal was wrapped in the orange plastic mesh that cut my lower face like a checkerboard when I careened into it headfirst. I also seemed to have broken a couple of teeth, one of which the emergency dentist would inform us would have to be pulled out, and would lead to my being known as “Fang” to my racing friends. I hated the feeling of the plastic retainer and fake incisor so much that I decided to go toothless while I waited for a permanent replacement.
I have been thinking about this a lot lately, especially now that my low vision kid has decided that more than anything else, he wants to play soccer.
I am also low vision, and have been my whole life, which might make you wonder what I was doing racing bikes. Was that why I rode head-first into a barricade? Yes, I am low vision, born with a neurological condition called nystagmus that makes my eyes shake and reduces my visual acuity. I don’t see well enough to pass the vision test at the DMV, and I can’t drive, but there was a period in my late twenties when all I cared about doing was becoming a professional bike racer.
While I regret the time and money I spent trying to make my vision better, no part of me regrets my attempt at serious bike racing.
From the very first racing clinic I joined, I was always questioning whether I could do it with my vision, but I loved riding my bike. I very much wanted to be able to see normally, and this phase in my life coincided with my chasing “cures” or mitigation strategies for my eye movement -- none of which ended up improving my vision. Eventually, after witnessing enough crashes that I was responsible for or involved with where friends or teammates were pretty badly banged up, I decided I couldn’t keep racing. I also accepted that vision improvement wasn't ever going to be possible.
Of course some part of me is still sad about this, but I'm glad that, if nothing else, the decision was mine to make. And while I regret the time and money I spent trying to make my vision better (in particular an unfortunate allergic reaction to the sutures in one eye surgery), no part of me regrets my attempt at serious bike racing.
From the time he was diagnosed with the same eye condition a few weeks after he was born, I have have wanted to make sure my son grew up in a world, as much as I could landscape it, that taught him to value his strengths and sidestep his weaknesses.
The first and most obvious of these were ball sports. When your depth vision is limited and the way your brain perceives the images from your eyes makes it difficult to track fast moving objects, things like trying in vain to hit a tennis ball or the repeat bloody noses I got playing volleyball in middle school PE really stay with you. Ball sports were always hell for me, in other words, and I wanted my son to have nothing to do with them.
Instead I encouraged sports where his vision wouldn’t be a limitation, like running or swimming. And at first, I was really militant about this. I insisted on a policy of no baby or toddler clothes with balls on them. At one point my mother, terrified of my wrath, sewed butterfly patches over the baseball and soccer paraphernalia on a sun hat she’d found for him.
But of course my kid had different ideas.
His obsession started with golf. Mini golf at first, which my husband and his brother started to take the kid to during the pandemic. This progressed to the driving range, and one of those pieces of putting green grass that lived permanently unfurled taking over most of our living room. My husband had once tried to take me to a driving range early in our relationship, and I was so terrible and made so many embarrassingly large divots in the grass he never tried to get me to go again. I knew my awfulness at golf wasn’t only because of my vision, so I was supportive of their golf outings. Sure, not being able to really see where a ball went when you hit it would definitely not be an asset, but it would be the kind of thing that you could always get someone you were playing with to describe. Worst case, your ball didn’t go where you wanted it to. It seemed a lot better than knocking some teeth out.
Second grade started and my kid transferred to a new school. The first day he came home and told me about this amazing game called four square. He was obsessed and insisted we get a four square ball so we could play in the park next to our house after school, which he did, happily, for two plus hours on weekends. Four square was the best part of second grade, he regularly told me. Again, the stakes were low, as long as he was having fun, I didn’t care. So what if he ended up eliminated more than the other kids? If he didn’t like that feeling, he could always figure out something else to do on the playground. Though part of my willingness to buy a ball for home was to see that he did get the chance to practice as much as he wanted. Even if he couldn’t catch the ball every time, he could still have a wicked serve and end up surviving the game that way.
I think of all the joy this could bring for him, even if it’s a little harder, or he’s never very “good.”
Then a kid on our block joined a soccer team, and I could tell that my kid wanted to as well. My goal was always to raise a child who felt no shame about his vision, but in conversations with him, I realized he didn’t fully yet grasp how much less he (and I) see than other people. I wanted him to be able to follow his interests and I knew that he loved to be athletic. Moving and pushing his body was of course something I could understand the visceral need for. But I knew the youth soccer scene was brutal, and I didn’t want him to be crushed emotionally.
Some parts of soccer he could be good at — he loved to run and he could learn good ball handling skills. But he was never going to be able to see and track a fast-moving, airborne ball as well as his friends without nystagmus. I hated to set him up for that eventual disappointment.
But then I think back on my mom. Many parents of low vision kids don’t teach them to bike. My balance has always been a little wonky — probably not helped by prism glasses the doctors prescribed — so my mom says my learning to ride wasn’t as easy as it was for my siblings. She also must have been so fearful when I started to ride with traffic, and eventually on my own. But she let me take those risks.
And I am so grateful. I can’t picture my life without biking — the freedom to get where I needed to go, the mental health benefits that in darker periods of my twenties were mitigated through hours of moving meditation on two wheels, the physical strength and health a lifetime of biking has given me.
Maybe soccer will be that way for my kid. I think about him playing pickup games with friends in college, with his future coworkers, maybe with his future child. I think of all the joy this could bring for him, even if it’s a little harder, or he’s never very “good.”
Mid-September comes and it’s time to sign up for after school activities. When I ask my kid what activity he wants to sign up for, I keep soccer on the list of choices. Of course, he picks it. I considered whether I should try to say something to the coach. Would they notice his eye movement and head tilt, which most adults read as him not paying attention? But if I said something, would the coach act differently around him in practice? I didn’t want him singled out. I decided it was better to not disclose.
I was out of town on a work trip for the first week of practice and as I was waiting for my flight home, I realized his first practice had just ended.
“How was soccer?” I texted.
“It was great. I love it!” he replied, almost instantly. I was relieved but in the back of my mind, I knew that at some point soccer would force him to confront his limitations.
In particular with disabled kids, as parents and caregivers, we have the tendency to be overprotective. We know there is so much pain, so many barriers they will inevitably encounter, it feels wise to mitigate a few by steering our little ones away from the fences, away from where we know there will be heartbreak and struggle and their differences will only be amplified. But I am challenging myself, and I’m challenging you all as parents, in particular parents of kids with disabilities, to allow your kid to follow their passions, even if you know their limitations or the risks. If my mom had questioned or discouraged my bike racing, I know (and she probably knew, too) that it would have only resulted in me throwing myself more deeply into it.
And while it took a couple of years of struggle for me to realize my limits and to grieve the path I couldn’t take, this gradual process left my relationship with her stronger. I can see now how hard it must have been for her, but she trusted me to make these decisions myself, on my own terms and in my own time. I'm glad she gave me the chance to get there.
Anna Zivarts is the author of When Driving Isn't An Option: Steering Away from Car Dependency (Island Press, 2024).
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