epilepsy dad

Tag: life

  • Another Milestone He Cannot Reach

    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.

  • Getting Used to It

    Getting Used to It

    I’ve been on this epilepsy journey with my son for more than ten years. Ten years of seizures, medications, side effects, appointments, therapies, surgeries, sleepless nights, and the fear and instability that come with having uncontrolled seizures.

    After ten years of anything, most people assume you’d eventually get used to it. Like living next to a railroad track long enough that the passing trains become background noise, or becoming so accustomed to planes overhead that you stop noticing them entirely. They imagine that after a decade of this life, the shock would soften, the fear would fade, and that somehow repetition would dull the edges.

    But it never does.

    Each seizure still stops the room, stops my thoughts, and stops whatever sense of normalcy I’ve managed to build. You don’t get used to it. You just get better at pretending you’re not breaking inside while you find a way to keep going on the outside.

    That ability so many of us develop — to keep going, to go to work, the grocery store, the pharmacy, to keep the house clean, to pay the bills — can create the illusion that we’ve somehow normalized it all simply because it’s familiar. It can make it look easy from the outside, as if what we live with has become background noise to an otherwise ordinary life.

    But it’s not background noise. It’s deafening. It drowns out everything else, and it takes effort — real, constant effort — to strain past that noise and hear the rest of the world. It takes effort to juggle routine tasks with the medical needs that keep my son going. It takes effort to reorganize an entire day of obligations when he has more or longer seizures that require rescue medication.

    The reality is that there is no getting used to it. And that truth reveals itself over and over again.

    Not after ten years, not after a thousand seizures, not after all the appointments, therapies, and sleepless nights. I’ve been walking this epilepsy path with my son for more than a decade, and still, every seizure cuts through whatever calm I’ve managed to create.

    Time doesn’t dull the impact; it just teaches you how to carry it.

  • The D Word

    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.

  • More Than Survival

    More Than Survival

    When I was young, I didn’t have a lot of support learning how to manage big emotions. When things got hard, I would go internal, like a turtle pulling itself into its shell. I’d get anxious and scared, pulling my extremities closer to my body to make myself as small as possible until the danger passed.

    That was a survival skill, but while it helped me get through the danger, it didn’t address the fear and anxiety that remained. I never learned to regulate my emotions and nervous system. As a result, I spent much of my life being an anxious, introverted, scared little boy and hiding from the world.

    I developed other skills to compensate. I found the courage to join the Army. After the army, I started a career, got promoted, and led teams. I got married and started a family. That’s when those compensatory skills began to fail, and I reverted to the safety of going internal, which had worked for me. Still, it didn’t work for deepening a relationship or dealing with difficult situations together.

    The stress of starting a family is real, and it was terrifying to bring another life into the world and be responsible for keeping it alive. I knew I wanted to give my son a better childhood and life than I had, which felt like a huge responsibility especially considering I had no reference or idea what that meant. It was easy to do the fun stuff with him, but the stress and anxiety brought some of those survival skills back to the surface which created distance between me and my family. But we managed.

    The bigger test was when we moved to Pennsylvania. We moved across the county into a new city for a new job and, within a few months, my son also began having seizures. Within that first year of moving, we spent nearly six months in the hospital trying to get his seizures under control, dealing with side effects from his medications, behavioral issues, and the fear of losing him, all in a new environment where we had no support.

    Again, those survival skills that I learned as a child came back in full force. I forced my emotions down inside my shell and focused my energy on the logistics and on getting things done, rather than dealing with the fear, anxiety, shame, and despair that were trying to make their presence known.

    That could be what was necessary. I needed to keep my job, maintain our insurance, put food on the table, and create a sense of normalcy in an unstable and unnatural time. While the crisis was happening, I needed that focus and detachment. But afterward, when the danger had subsided and what was left was the rebuilding of our son, that detachment became a divide, a chasm I couldn’t reach across to connect with my family.

    I’ve spent a lot of time since then to cross that divide. Therapy, self-reflection, and the hard work of being present have brought me closer to my son, and I hope they have also set an example for him on how to balance survival with connection. It’s not easy, but it’s worth it because my son deserves more than just survival.

    He deserves me.

  • It’s Not Your Fault

    It’s Not Your Fault

    For most of my life, I carried the idea that the things that happened to me as a child were my fault.

    I didn’t think I was a bad kid, but I knew and hung out with plenty of bad kids. My neighborhood growing up wasn’t a stranger to crime and drugs. Compared to many of my friends, I was an angel. But I was a child, and I did childish things as I experimented and explored the world. I swore, stole, lied, snuck out at night, and fought with my sister. But often the consequences of these actions were disproportionate to the severity of the infractions.

    As a result, I began to blame myself for those consequences. It was a survival mechanism. I had to make it my fault because my developing brain couldn’t make sense of the idea that the people who were supposed to protect me and take care of me were hurting me.

    As I got older, that behavior continued. It was easier to take responsibility for everything than it was to shift that responsibility to the other person. It was easier to feel that the work I had done wasn’t enough or wasn’t the right work, which is why the other person was angry or disappointed. The idea that I was enough, that I was worthy, and that I wasn’t to blame never seemed like an option.

    The result was that I spent much of my life in unhealthy situations, convinced that if I could fix myself, everything else would fall into place. But no matter how hard I tried, it never worked.

    I didn’t realize that’s what I was doing until a few years ago. There is a movie trope, “it’s not your fault,” that is a common line used to reassure someone who blames themselves for a tragic event. One powerful example is in Good Will Hunting, where Sean, played by Robin Williams, repeats the line multiple times until Will, played by Matt Damon, breaks down and cries.

    It was a surreal moment to have that play out in my life. At the time, it was directed at my past. It took me time (and therapy) to realize it also applied to aspects of my present, too.

    That realization is what will help me set my son on a different path, one where he doesn’t struggle with blame, shame, and worthiness, the same way that I did. I don’t want him to blame himself for his seizures, his condition, or especially the way the world reacts to him. I want him to be able to put the actions of others on them and not internalize them as what he deserves because of who he is. Most of all, I want him to know—now, not decades from now—that who he is is already enough.

    As parents, we want our kids to have it better than we did. In many ways, that may not be possible given the challenges he will face. But if he can live a life without carrying the blame for others, whatever those challenges may be, he will have a freedom I never knew. A freedom to face what comes without the added weight of shame. A freedom to believe he is worthy of love and belonging just as he is.

    And maybe, in giving that to him, I’ll learn to finally believe it for myself, too.