epilepsy dad

Category: lifestyle

  • The Lost Year

    The Lost Year

    This has been an extremely difficult year.

    Not difficult in a single, dramatic way.

    Difficult in the slow accumulation of loss.

    The kind that doesn’t arrive all at once, but keeps showing up until you realize you’re standing in a year that no longer resembles the one you started in.

    My father passed away this fall.

    It was slow, and then it was fast. Months of watching a body fail, followed by an ending that still came as a shock. His world had grown smaller. His body no longer cooperated. His mind, at times, betrayed him. He was unhappy in ways that couldn’t be fixed.

    His death brought grief. And guilt. And the familiar questions that arrive uninvited:

    Should I have spent more time? Should I have been more patient? Should I have done something differently?

    It also brought relief. And that’s harder to admit out loud. Relief that he wasn’t trapped in a body that no longer worked. Relief that the suffering had ended. Relief that the waiting was over.

    I am grateful that we moved him closer. Grateful that my son got to know him. That he saw my son play baseball. That he showed interest in my son’s life, even as his own was narrowing. Those moments matter. They don’t cancel the loss, but they soften its edges.

    Work added its own quiet weight this year.

    For much of the year, I was in a role that wasn’t a good fit. The frustration built slowly, then all at once. Fear kept me there longer than I should have stayed. Responsibility did too. The job search dragged on, heavy with uncertainty. I eventually landed somewhere new, which brought some relief—but even that has continued to shift. The year ends without the sense of stability I hoped for.

    My son still hasn’t seen the benefits we were hoping for from DBS. In fact, he’s having more seizures now than he was at the beginning of the year. When you’ve lived with uncertainty for this long, you’d think it would lose its power. It doesn’t. Each setback still lands hard.

    My goddaughter’s health has changed as well, requiring more care, more attention, more presence. The needs don’t slow down just because you’re already stretched thin.

    There have been other changes this year, too. Big ones. The kind that rearrange the shape of your life without asking permission. The kind that leave you trying to find your footing in a version of the future you didn’t expect to be standing in.

    This year can’t end soon enough.

    It feels like a year of subtraction. A year where things were taken faster than they could be replaced. A year where even gratitude felt heavy, like another thing I was supposed to hold carefully and do “right.”

    And still, some things remain.

    My son.

    My goddaughter.

    My dogs.

    My health.

    A few friends.

    A job. Insurance. Shelter.

    I don’t list these things to balance the scales. They don’t erase what was lost. They just exist alongside it.

    I’ll carry them into the new year. I’ll keep showing up for the kids. I’ll keep working toward better outcomes where I can, and accepting limits where I can’t. I’ll keep looking for steadier ground.

    This year feels like the floor.

    Not the ceiling.

    Next year isn’t about rebuilding what was lost. Some things can’t be rebuilt. Some things shouldn’t be.

    Next year is about making something new.

  • When Help Isn’t Helping

    When Help Isn’t Helping

    It’s great to have people in your life who want to help. I know how lucky I am to have friends and family who care, who check in, who ask what they can do. I am very fortunate.

    But when you’re already overwhelmed, even the offer of help can add to the weight. Suddenly, instead of just managing my own list, I’m trying to come up with something for someone else to do so they feel helpful, because they genuinely want to be helpful. And that becomes one more responsibility, one more set of feelings to consider.

    The other day, my mom offered to help. I told her I’d let her know if something came up. She gently pushed back and said I needed to find something for her to do—some way for her to contribute—because she needed to feel like she was helping.

    And in that moment, my stress level doubled. What was meant as support felt like another to-do. Another thing to figure out. Another emotional dynamic to manage. The offer wasn’t helping; it was giving me more to carry.

    I know some of this is me. I’ve never been good at asking for or accepting help. Maybe it’s because I don’t want to put anyone out. Maybe it’s because I feel like I should be able to handle it on my own. Maybe it’s because I don’t always feel worthy of the help being offered. Or maybe it’s that the help being offered doesn’t match the help I need in that moment, and then I feel guilty for not having a task ready.

    There are so many obstacles in my way—my sense of responsibility, my discomfort, my self-doubt. I don’t want people to think I’m ungrateful. I don’t want them to think I don’t need them. I don’t want them to stop offering.

    And sometimes, the truth is that what helps isn’t a task at all. Sometimes it’s just knowing someone is thinking of us. Sometimes it’s an invitation to grab a coffee or play tennis or step away from everything for an hour. Sometimes the help is simply the reminder that we’re not doing this alone.

    But so often, help doesn’t feel like help. It feels complicated.

    Maybe that’s because I don’t yet have a healthy relationship with accepting help. Maybe there’s something I need to learn about receiving care instead of only giving it.

    Because the reality is: my son will likely always need support. I want him to grow up knowing he can ask for help without shame. I want him to feel worthy of help. I want him to see that needing support doesn’t mean he’s a burden.

    I want to model that for him.

    But I’m still figuring out how to do that while shielding him from the stress and overwhelm that comes with being the one who needs help. I’m still learning how to receive help without turning it into another source of pressure.

    Maybe the lesson starts with accepting that I can’t do everything alone. And maybe the next step is allowing others—genuinely, openly, imperfectly—to help lighten the load in the ways they can.

    Even if that means learning how to let help actually help.

  • 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.

  • Breaking the Survival Loop

    Breaking the Survival Loop

    There’s a theme in my last few posts. Survival.

    Survival is the most primitive, instinctive reaction. It’s the “keep myself safe” and “keep this child alive” mode. It’s adrenaline, reflex, and emergency decision-making. No long-term view. No nuance. It’s the hospital room at 3 AM when you’re just trying to make it to the next hour.

    Survival is the body and brain trying to stay alive.

    I’m good at survival. I’ve had a lot of practice.

    Coping is the layer just above survival. It’s how you function after the emergency — when the crisis becomes chronic. It’s the routines, the systems, the compartmentalization we use to manage stress, danger, or uncertainty. It’s “I can’t live in panic all the time, so how do I manage this?”

    Coping is the mind trying to live with what survival couldn’t fix.

    I’m not as good at coping. There’s still a lot of pretending I’m fine. Emotional numbing. Overfunctioning. Avoidance. Self-blame and shame.

    This is where I get stuck. Not always, and not as much as I used to, but I still see it happening. Avoiding the hard conversation or phone call. Sticking to the lists and logistics because feeling anything is too much. Blaming myself because it’s easier than accepting that some things are simply out of my control.

    Without healthy coping, it’s hard to reach the next level: connection — where healing, relationship, and meaning can actually emerge.

    It’s like I’ve been walking on a path, and I see a place where it branches off. For years, I didn’t take it. I stayed on the familiar loop, not realizing it was holding me back. Sometimes I’d look back and wonder if I should have taken the other path. But eventually, I’d face forward and keep moving, step by step.

    In the last few years, I’ve started stepping onto that new path. I’ve opened up to other people. I’ve accepted help. I’ve stopped automatically blaming myself — or at least, when I do, I pause and question whether it’s really true.

    In moments when everything feels overwhelming, leaving the old loop feels different. My old behaviors, patterns, and habits still tug at me, trying to pull me back to the familiar path. But now I see more branches, more opportunities to connect. I don’t always take them — but sometimes I do. And when I do, it brings gratitude, support, and the sense that I’m not so alone.

    Survival keeps the body alive.

    Coping keeps life moving.

    Connection makes life worth living.