At a recent appointment, my son brought up the topic of driving. Even though we had talked about how he wouldn’t be able to get a license while he was still having seizures, I knew that, once he turned 16, we would have to revisit the conversation.
I remember getting my driver’s license shortly after my 16th birthday. I had been working since I was 14 and saved up enough money to buy a car. It was a white Hyundai Excel with a manual transmission, air conditioning, and a sunroof. It wasn’t the flashiest car, but it was mine, and it gave me freedom to go where I wanted when I wanted. I started driving to school instead of taking the bus. I drove to work instead of riding my bike. I could go where I wanted and get there faster. The car gave me more range, speed, and independence.
I know that feeling is something my son wants, especially as some of his friends will soon be getting their learner’s permits or licenses. In all likelihood, though, he won’t be able to drive. Even if we manage to keep him seizure-free for six months, despite never going more than a day without a seizure since they started, the responsibility of having a license and driving isn’t something he’s ready for today.
His challenges with executive functioning and slower processing are a dangerous combination behind the wheel of a two-ton moving rocket. The coordination required to operate a vehicle physically and the focus needed to mentally navigate safely on the streets and around obstacles are both areas where he struggles every day.
He needs reminders to stay on task, whether it’s chores or homework. He has learned to make a few basic microwave meals, but even then, we’ve learned first-hand what happens to the mac and cheese in the microwave when you forget to add water.
When he brings up driving, I can feel the weight of what he’s really asking — not just Can I drive?, but Will I ever be able to? Will I ever be like everyone else?
That’s the part that breaks me.
Driving represents so much more than transportation. It’s independence, choice, and self-direction. It’s being able to decide where to go and when. And for him, it’s a symbol of everything that still feels out of reach.
Because the truth is, driving isn’t just about safety. It’s about trust — trust in his body, his brain, and the world. And right now, none of those things is reliable enough to hand him the keys.
When I think about him behind the wheel, I imagine all the things that could go wrong. The seizures, the split-second decisions, the distractions. The danger is obvious. But underneath that fear is a quieter one — that he’ll never have the kind of independence that comes so easily to other kids his age. That he’ll always need someone — me, or someone after me — to help him navigate the world.
That thought terrifies me more than anything else. Because as much as I want to keep him safe, I also want him to have a life that’s his. I want him to feel capable, to feel like he belongs in the world, not just protected from it.
So for now, we’ll keep talking about driving — what it means, what it represents. Maybe someday he’ll be able to drive, maybe not. But my hope is that he still finds his own kind of freedom, one that doesn’t depend on a license or a steering wheel. One that lets him move through the world in his own way, with confidence and joy.
Even if he’ll always need help getting there.
As a mother of a 22 yr old son with refractory epilepsy, I can relate to this but in my experience it’s been heartbreaking. I’ve resorted to moving the focus onto other forms of independence. My husband has been optimistic and puts the hope in my son for one day driving or even for curing epilepsy. Seven years later however I find myself thinking about how we keep kicking the ball down the road – living with the hope of “one day …… “ and then I wonder wouldn’t driving be less significant had we been born into almost any other culture. I feel like I am fighting an uphill battle in saying a life is only worth living or meaningful or whatever adjective ….. if you can drive ? You are going to pause your life and hold your breath with the main goal of driving? I’d like to think that I’d have found a way around driving being the ultimate milestone of independence but I am not in his shoes. I have been heart broken over the milestones he has missed. I’ve held my breath hoping he could get seizure freedom. I’ve wanted him to know the freedom of driving. He was left out of many social gatherings in high school due to not being able to meet up with others in organic ways. He’s accepted it and keeps his hope at bay but my wish is for him to thrive beyond it! I may sound like someone who doesn’t understand what it feels like and while that’s true, I also feel disheartened that so much is made about driving – that is is held up as some measure of a happy and meaningful life. I too pray for a cure to this horrible affliction of epilepsy and for that I will never give up being hopeful and positive. While driving is important in our culture and it is a means of moving one’s life forward in relationships and in careers etc, it can’t be the only way.