Tag: future

Another Milestone He Cannot Reach

We sat in the exam room, waiting for the doctor.

It was his regular follow-up with his neurologist. She has managed his care for almost ten years. She has been with him through keto, multiple surgeries, and the rollercoaster of physical and emotional effects that his condition has had on my son.

This appointment, in particular, was one I had been dreading ever since my son brought up the topic of driving with his therapist. She suggested that he ask his neurologist about it at his next appointment.

This was that appointment.

There was a significant buildup between his first mention of driving and this appointment. I know it was on his mind, so it was on my mind, too. It wasn’t the anticipation of the question or the uncertainty of what the answer might be. The mounting pressure came from the finality of that answer when it was given.

The pressure built up slowly as the days went on. But the morning of the appointment, it spiked. Asking that question was the only thing on my son’s mind. He brought it up when we left the house. He brought it up when we got to the hospital. He brought it up to me when our appointment started, even before the pleasantries were done. I motioned for him to wait.

After his exam, his doctor asked if he had any questions.

I looked at my son and nodded, indicating it was time for his question.

He looked at the doctor and asked the seven-word phrase that he had been holding onto for weeks.

“Will I ever be able to drive?”

The pressure that had built up finally exploded, pushing the air out of the room.

I looked from my son to the doctor as she formulated her answer. I saw her shoulders lower as she took a breath. Careful, concerned, and compassionate. But also direct.

“Probably not,” she said. “No.”

I looked back at my son. I couldn’t judge his reaction. He sat there, taking a punch to the gut and not even flinching. He knew what the answer was going to be. And then he heard it. And then… nothing.

I knew what the answer was too, and it’s not like I was hoping for a different answer. I just hoped it wouldn’t hurt. I hoped it wouldn’t matter.

I finally took a breath. I wanted to just hold him. I wanted to find a positive spin. I wanted to not think about how his condition has taken so many things from him.

My heart was on the floor. I was gutted.

“I will always tell you the truth,” his doctor added.

The appointment ended soon after, but the weight of that moment stayed with me. I could see him turning it over quietly, the way he processes most big things. A few days later, I checked in with him to see how he was feeling.

“I’m ok,” he offered.

That is usually his first response to questions about his feelings. I gently pressed, trying not to project what I thought he must be feeling after hearing from his doctor.

We landed on disappointed and resigned. Having the answer helped quell the uncertainty, even if the answer wasn’t what he wanted.

Moments like this remind me of something I live with every day: he faces losses most teenagers never even consider. They arrive quietly, in small conversations and clinical truths, and I know they won’t be the last. There will be more moments like this in his future, more things he has to let go of. But we will keep living our lives around what he can do, not just what he can’t.

And no matter what lies ahead, I’ll be right beside him.

The D Word

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.

Another Year I Didn’t Think I’d Get

Every year, my son has a birthday that I didn’t think I’d get.

Since the age of five, he’s never gone more than a day or two without a seizure. There were times when he wouldn’t go an hour without one. And there were times when he was in status, and he wouldn’t stop seizing at all.

The first few years were especially scary. We would spend weeks admitted to the neurology floor of the children’s hospital, watching as the medical teams fought to keep my son alive. I would wake up next to him in the middle of the night to find doctors conferring, trying to find the next medication or treatment to try. His therapists would come during the day to help his body relearn what it had forgotten how to do. Each birthday we celebrated during that time was a gift, even if the time between them was unbearably hard.

Even after he was stable, his future was uncertain. The medications that reduced his seizures didn’t control them completely. That’s when his doctor introduced us to SUDEP (Sudden Unexplained Death in Epilepsy), and the leading risk factor is the presence of uncontrolled, generalized tonic-clonic (GTC) seizures, especially if they occur at night.

If I didn’t sleep before, I certainly wasn’t sleeping after that conversation. We installed a camera in his room to monitor him while he slept. I woke with every sound, every movement—or when there was too much time with neither.

Even this morning, as I was writing this post, I heard my son have a seizure in his room. It was longer than usual, so I used the VNS magnet and then his rescue medication before the seizure stopped.

As he turns sixteen, that’s more than eleven years without sleep. Eleven years of worry. Eleven years of hoping for another year.

And for eleven years, I have been given another year. Each one feels like a small miracle.

The fear never really goes away, but neither does the gratitude. I still hold my breath with every seizure, but I also get to watch my son grow taller, tell jokes, and dream about what comes next.

Sixteen years. Eleven years of worry. But also eleven years of laughter, stubbornness, love, and life.

Every year is another year I didn’t think I’d get.

And for that, I am endlessly thankful.