epilepsy dad

Category: seizures

  • A Step Back From the Edge

    A Step Back From the Edge

    I used to feel like I was already over the edge.

    Not standing near it. Not testing it. Over it.

    There were stretches where it felt like I was constantly catching myself mid-fall. Managing medications. Managing schedules. Managing finances. And at the same time, bracing for volatility. Wondering what I was walking into at the end of the day — whether it would be a call from school, a number on a bill, or a silence that meant something had already shifted.

    It wasn’t dramatic in the moment. It was just normal. That’s what makes it harder to recognize in hindsight. I was in freefall and calling it responsibility.

    My son still had seizures. My goddaughter still struggled. Work still pressed. But layered over all of it was instability. The kind that keeps your nervous system activated even when nothing specific is happening. The kind that makes you feel like collapse is always a few inches away.

    I hate heights.

    If I look over the side of a building, my body reacts before my mind does. There’s a queasy suspension. A sense that gravity is closer than it should be. That feeling used to live in my chest most days. Not because catastrophe was constant, but because it was always possible.

    The edge is still there.

    My son still has seizures. A cold still increases risk. My goddaughter is still medically fragile. Work is still work. The debt is still heavy.

    But I’m not over it anymore.

    I’m a step or two back.

    I can see the drop. I don’t like it. I don’t pretend it isn’t there. But I’m standing on solid ground. The weight I’m carrying feels steadier. It doesn’t swing the way it used to.

    That’s the difference.

    The risk hasn’t vanished. The responsibility hasn’t lessened. The uncertainty hasn’t resolved.

    What’s changed is the footing.

    I’m not bracing for the next shove. I’m not scanning every moment for signs of collapse. I’m not ending each day with the sense that I barely made it through.

    I’m standing.

    Close enough to respect the edge. Far enough back to move deliberately.

    The edge isn’t gone.

    But I’m not falling anymore.

  • No Extra

    No Extra

    There’s no extra right now.

    Not extra money. Not extra time. Not extra energy. The margins are narrow. The system runs because it has to.

    Sunday mornings are for medication.

    I make coffee. I put on a podcast or an audiobook. I stand at the kitchen island and start with mine. A few supplements come out first so they can go into my son’s pills later. Mine go straight into the organizer. His get laid out on a paper towel, seven days in a row, then transferred into the plastic containers. When they’re finished, Sunday goes on top.

    I take my pills. I set both containers on top of the coffee machine for when he wakes up. The dogs are usually on the couch, half-watching. They know the routine.

    Every morning I swap the containers. I take mine. I put them back. It’s mechanical. Quiet. Just part of the structure.

    Everything goes in the calendar now. Appointments. School events. Guitar lessons. Therapy. Tennis. If it isn’t there, it doesn’t exist. The to-do list is long, but it turns over. Things come off. New things go on. Nothing flashy, but nothing slipping.

    The house is tidy. The clothes are clean. The dogs get walked, even when it’s freezing. They get groomed. My son and I get haircuts regularly. It might look like a small luxury from the outside, but it feels more like maintenance. A way of saying we’re still taking care of what’s ours.

    There’s no extra, but there’s enough.

    We’re not adding new things. Guitar and tennis stay for now, but they’re the first to go if something else demands attention. I don’t feel deprived. What we have feels deliberate. Contained.

    The debt is heavy. The future has large shapes in it. I want clarity. I want the numbers to go down. I want more margin. But the day-to-day isn’t falling apart.

    That’s new.

    Control feels quiet. It isn’t about power. It’s about not bracing. It’s about knowing that if something goes wrong, it’s a problem to solve.

    I’ve been doing this job longer than the title suggests. Now there’s no one else to absorb it. Income. Meds. Schedules. Appointments. A cold this weekend. Likely more seizures. That’s just the math. I’ll adjust. I’ll keep going.

    The system holds.

    It isn’t elegant. It isn’t abundant. But it’s ordered. Maintained.

    There’s no extra right now.

    There’s what must get done. There’s what keeps us steady.

    For now, that’s enough.

  • The Long Middle

    The Long Middle

    The old version of me would still call this a crisis.

    There was a time when this much responsibility, this much uncertainty, this many variables would have felt like an emergency. Therapy, time, and experience have changed that. I don’t react the same way anymore. I don’t spiral at every shift.

    But that doesn’t mean it feels light.

    Everything is on me now. Income. Care. Medications. Schedules. Appointments. If my son catches a cold, I already know what that usually means. Colds often mean more seizures. That’s just a fact. I can’t change it. I won’t panic when it happens. I won’t treat it like a catastrophe.

    But I still have to carry it.

    The structure of my day hasn’t changed much. That’s part of what makes this the middle. Morning follows night. Work follows the morning routine and school drop-off. Pickup follows work. Dinner follows pickup. Bedtime follows dinner. Then it starts again.

    Each segment feels like a middle. The morning is between the night and the workday. The workday is between drop-off and pickup. The evening is between dinner and sleep. It’s like a loop that keeps folding back on itself. Nothing climactic. Nothing final. Just continuation.

    The worst version of events hasn’t come to pass.

    The things I used to brace for haven’t arrived.

    But nothing has resolved either.

    There are still things in motion. Still decisions that aren’t finished. Still outcomes I can’t control yet. I can see that an official “new life” is approaching, but even that feels like another middle. I’m not there yet. I’m here.

    Here looks like waking up, working out, showering, making breakfast, and packing lunches. It looks like responding to seizures while my son sleeps in late, postictal. It looks like getting him ready for school, dropping him off, going to work, leaving early to pick him up, and finishing work at home. Walking the dogs. Chores. Hoping for a game of Fortnite together before dinner. Cleanup. Bedtime routine. Repeat.

    It’s not dramatic. It’s not cinematic. It’s routine.

    And maybe that’s what the long middle really is.

    Not the beginning. Not the breakthrough. Not the clean ending. Just the steady stretch where responsibility becomes ordinary. Where weight doesn’t disappear, but it becomes familiar enough that you stop naming it every hour.

    The house is quieter now. Less chaotic. There’s space where noise used to be. That space isn’t exactly peaceful, but it isn’t volatile either. It just is.

    I don’t know what the future version of this life will look like. I know there are changes coming. I know certain realities are solidifying. But today is not about that.

    Today is about the loop. About carrying what needs carrying. About not treating endurance like emergency.

    The long middle isn’t dramatic.

    It’s repetitive. It’s responsible. It’s unfinished.

    And for now, it’s just the way it is.

  • 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.

  • 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.