epilepsy dad

Tag: family

  • Lost in the Story

    Lost in the Story

    Recently, we started watching Stranger Things.

    For most families, that means settling into the couch, grabbing snacks, and diving into the next episode. For us, it means something different.

    In between episodes, I have to remind him of what happened last time—who the characters are, what they’re trying to do, how the story left off. Even when we watched it the day before. Sometimes the same day.

    And when the new episode starts, I keep the remote close.

    Not to skip the scary parts.

    Not to turn up the volume.

    But to pause.

    To explain.

    To anchor him to what’s happening on the screen and how it connects to what came before.

    Sometimes it’s a quick reminder. Other times it’s a full recap: “That’s Will’s mom. Remember, she’s the one who put up all the Christmas lights. And these guys are going into the Upside Down. It’s like that dark world we saw last episode.”

    Sometimes he nods.

    Sometimes he asks more questions.

    Sometimes the explanation drifts away as quickly as it landed.

    It’s like this with every show. Every movie. A remote in one hand, a thread of the story in the other, trying to keep him connected to something that keeps slipping through his fingers.

    A few weeks ago, I read Still Alice, the book about a woman losing pieces of herself to Alzheimer’s. There’s a moment where her husband brings home movies because books have become too hard—too much to hold onto, too much to follow. Movies were supposed to be easier. But even those became confusing when scenes blurred together and storylines couldn’t be kept straight.

    She could no longer follow the thread of the plot or the significance of characters who weren’t in every scene. She could appreciate small moments but retained only a general sense of the film after the credits rolled.

    She wouldn’t understand why her family reacted the way they did to something on the screen, so she matched their expressions and faked the same reaction to protect them from how lost she was.

    Watching movies made her keenly aware of how lost she was.

    That part stopped me because it felt uncomfortably familiar.

    My son is not losing memories the way Alice was. His brain works differently for different reasons. But the impact is similar. He can’t follow all the threads. He struggles to remember the significance of characters who aren’t in every scene.

    And yet, he wants to watch these shows. He wants to enjoy them. He loves the characters, the action, the mystery. He wants to be part of the story.

    This is where the questions start to land heavy for me. I wonder if he is aware of how lost he is. I don’t know if he knows any different. But he probably sees that not everyone is lost. He knows that I am not lost.

    Does he think this is a common thing for kids his age? Does he believe you need to be a grown-up to follow the threads? Or does he know, somewhere inside, that this confusion is something uniquely his?

    I don’t have those answers. But I do know that every time I reach for the remote, I am not just pausing a show. I am trying to make sure he never feels like he has to fake understanding to keep up. I am trying to meet him where he is, in the spaces between the story he wants to follow and the story he is able to hold.

  • 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.

  • 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.

  • Another Year I Didn’t Think I’d Get

    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.