epilepsy dad

  • It Doesn’t Get Easier

    It Doesn’t Get Easier

    It was pitch black in the cabin as I laid in the bed next to my son. I was asleep but found myself instantly awake, alert and staring up towards the ceiling the ceiling. There was no movement and no sound, but I knew what was coming. The reason that I was awake was that my son started to have a seizure. That initial moment when my son’s body tightened was enough to pull me from my sleep. What came next was the rhythmic tensing of his muscles and the accompanying moaning as the air was expelled from his lungs and crossed his vocal chords.

    I turned to him the same way I always do and told him he was going to be ok. I rubbed his back and head until the seizure passed. Then I rearranged his body that had shifted during the seizure so that his head rested on the pillow so that he could return to sleep.

    Some nights, these seizures seem so routine that I can easily fall back to sleep, too. I switch on my autopilot and replay the same actions to comfort him and reposition him in bed. Once he is sleeping, my autopilot guides me safely back to my own dreams.

    The night in the cabin was not one of those nights. Instead, I laid in bed next to my son and felt a rush of sadness wash over me. In the four years that he has been having them, I have seen hundreds of seizures. Including subclinicals, he’s had thousands. Seizures and epilepsy are intertwined with every decision we make. We’ve been living with them so long that I thought it would get easier to see them. But it hasn’t. Each seizure brings me back to that first one. Those feelings of helplessness. They’re still there.

    During the day, it’s not seizures. It’s his struggling to find words. It’s his inability to remember what he did the day before. It’s him guessing at the right thing to say or do because his brain won’t make that connection for him. It’s him constantly saying sorry because his brain lets him down.

    It’s hard to not watch my son struggle and feel sad. As he stumbles over words to find the one he wants, it tears me up inside. I want to help him. I want to make it easier. I want to say the word for him so that he doesn’t struggle. But I know that he needs to find it himself. He needs to practice. So I smile and wait for him to find that word and try not to let my face betray the emotions I feel inside.

    Things are supposed to get easier the more you do them. Things are supposed to get easier the more you are exposed to them. We’re four years in but, while we have grown and are better capable of handling the mechanical motions of dealing with seizures, it still breaks my heart.

    Every day we are faced with the reality of what epilepsy is taking from my son. Every day, we see seizures and the physical, cognitive, and emotional toll that epilepsy is taking on him. And every day ends knowing that we’re going to go through it again the next day.

    It doesn’t get easier. Not really.

  • Planning For The Short Term

    Planning For The Short Term

    “Life is what happens while you are busy making other plans” ~Allen Saunders

    At the end of the school year, we finally received an Individualized Education Plan (IEP) for my son. An IEP defines individualized educational goals for children determined to have a disability and any accommodations that need to be made to help achieve those goals. Before the summer break, we sat with our lawyer across the table from the school district to talk about the specific details of my son’s goals and accommodations for the third grade.

    Even though the start of the school year was only two months away, we knew that whatever we put into the plan was likely to change before the first day of third grade. We knew because it always does. We’ve tried different schedules and approaches before we had the IEP. They might work for a few weeks until we change a medication or until his fatigue builds up so much that he can’t function and we need to adjust.

    The same goes for other aspects of his life. The constant variance of his seizure burden and his mental and physical stamina means that we can rarely look too far into the future. Sometimes, we plan for a week or a few weeks in advance. We might plan a vacation a few months away because we know that, wherever we are, we can make it work for a short period of time. But we’ve learned that putting things in the calendar is more of a suggestion or a placeholder than it is a commitment.

    Most of our plans are short-term plans. We look ahead at the next day or the next week and try to plan our lives. My son’s health is unpredictable. His physical health. His mental state. It constantly changes. The decisions we make any given day, like skipping a nap, can have consequences that change any plans that we’ve had. Extra seizures one morning. An accumulation of exhaustion that we didn’t see building up. We’re adapting more than we’re predicting by adjusting our plan moment to moment based on where he is physically and mentally.

    We rarely look beyond that because we have no idea what the future has in store for my son. We still contribute to an education savings account for my son because I don’t want to consider the possibility that he won’t need it. We’ve put off estate and custody discussions because these conversations are impossible and because planning that far out seems futile. Things change day-to-day and month to month so planning for years away seems impossible.

    “Life is what happens while you are busy making other plans.” The Allen Saunders quote is often attributed to John Lennon because he popularized it in Beautiful Boy (Darling Boy).

    Out on the ocean sailing away
    I can hardly wait
    To see you come of age
    But I guess we’ll both just have to be patient
    ‘Cause it’s a long way to go
    A hard row to hoe
    Yes, it’s a long way to go
    But in the meantime
    Before you cross the street
    Take my hand
    Life is what happens to you while you’re busy making other plans

    I know the future is going to come whether we want it to or not and whether we know what it has in store for us or not. Maybe I’m trying to give him the best life I can in the present. Maybe we’re just trying to focus on living our lives and taking each unpredictable day as it comes. Maybe I focus on the short-term because I’m too afraid to think about the long-term and what that the doctors think might be in store for him.

    We have a long way to go, and it’s a hard row to hoe. But in the meantime, before you cross the street, take my hand.

  • Inconsiderate Epilepsy

    Inconsiderate Epilepsy

    It was a few days before a big meeting that I was organizing at work. I was pulling together the leadership teams involved with a project that I am working on to talk about our progress. It was a big deal and I wore my anxiety like a jacket. Even if I wasn’t preparing for the meeting, I was thinking about it. I was stressing about it.

    The meeting was on Tuesday. On the Sunday before, we were having a good day. We saw a movie. My son went to the park with a friend and I worked on my slides for the meeting. That night, though, my son started to act strangely. He was skirting boundaries. He played with an outdoor ball in the house. He started to play a little too dangerously with his foam baseball bat. I asked if he was okay and which way his brain was going and he said he was fine and that his brain was going forward, but I sensed something was off.

    When it was bedtime, my wife started to get him ready and I fired up the laptop to work on my presentation. But when she asked him to clean up his toys, he started to throw a fit. It escalated quickly and before I knew it, I was sitting on the ground holding him. We tried to work on his breathing exercises and his coping skills but he was past the point of listening.

    He was trying to hit us, spit on us, and calling us by our first names and saying mean things. For more than thirty minutes, I sat on the floor, holding my son, trying to comfort him. A few months ago, these episodes were happening all the time. Now, they are rare. But whether they are constant or rare, the impact of seeing your son struggle with his emotional regulation and become someone else is painful. After he finally came out of it and we put him to bed, I tried to work on my presentation, but I couldn’t. I was so shaken up.

    The next day, I went to work thinking about the night before and also stressing about the meeting that was now only a day away. It’s not easy to go in the next day and tune out the night before. It’s the same when he has more seizures during the night than he normally does. I show up to work stressed and tired but try to focus on my work. I just hope it doesn’t happen on a day where I have to be “on.”

    Epilepsy doesn’t care what else you have going on. Epilepsy didn’t care about my big meeting. It doesn’t care that we’re on vacation. It doesn’t care that we have plans.

    My son had seizures on the baseball field. Seizures in Hawaii. At Disney world. A seizure in the pool. At school. But it’s not just seizures, it’s the overmedicated, the behavioral issues, the fatigue. Epilepsy and its entourage can show up anywhere, anytime.

    When it does, you can’t send it away. Everything else gets pushed down the priority list. You have to deal with it right now.

    And then, after you are done dealing with it, you figure out how to transition out of crisis mode. You go to work or you go to school and figure out how to go back to normal.

    “Normal”, as if it’s a different place. But it isn’t. This is our normal.

  • Happy Anniversary, Epilepsy

    Happy Anniversary, Epilepsy

    Four years ago this week, my son had his first seizure.

    Four years.

    Almost half his life.

    He doesn’t remember the time before. Most days, neither do I. Our memories are of our new life that started the night his body contorted and stiffened on the floor of the arcade. It was the night that time stopped as we prayed that our son would come back to us and when I held his frozen body in a thunderstorm waiting for the ambulance to arrive.

    Even though his second seizure wouldn’t be for nearly two months, the fear and uncertainty that the first one had caused lingered. It turned out that time was the quiet before the storm…that feeling you get when the clouds darken and the air changes and you know the storm is close. The air filled with the same electricity that would soon wreak havoc on my son’s developing brain.

    And then it happened. The second seizure burst free just as my son sat in his seat onboard an airplane. Another thirty minutes and the plane would have been in the air but, thankfully, the crew got him safely off the plane and on his way to the children’s hospital. Within a few months, his seizures would be out of control and we’d be back in the same hospital learning firsthand what status epilepticus was.

    It would take nearly two years before my son was stable. But even then, we were still adjusting medication, dealing with side effects and behavioral issues, and occasionally using his rescue medication. He was stable, but not living the life we had planned. But by then we were beginning to realize that we needed a new plan.

    Four years in, we’re still adjusting that plan. There hasn’t been a day that has not been affected by epilepsy. He’s had countless seizures. He’s been on and off medications and suffered endless side effects. He’s had a barrage of blood draws, EEGs, and other testing and had a myriad of therapies trying to restore what epilepsy had taken away. He’s been isolated from his peers and falling more behind in a world that doesn’t wait for people who can’t keep up, or are different, or need help.

    After four years, I thought we’d be further along. I hoped he would outgrow his seizures or we’d at least have them under control. I thought we would have figured it all out. I thought we’d be able to get back to normal. But, instead, we had to change our definition of “normal” and learn how to live life with different expectations.

    In these four years, I’ve learned a lot of other things, too. I think I am a better man, husband, and father than I was before this started. And we’ve had so many wonderful experiences and met some amazing people on our journey. But I can’t bring myself to be grateful. I can’t allow myself to acknowledge the things that are good because I don’t want to reward the monster that continues to attack my son. Our life is what it is in spite of epilepsy, not because of it.

    Four years is a long time. But I know we have many years to go. We didn’t ask for this, and we don’t want it. But it looks like we’re going to be together for a while.

    So, Happy Anniversary, Epilepsy.

    I didn’t get you anything.

    Because I hate you.

  • Poopsicle, Popsicle, Dreamsicle

    Poopsicle, Popsicle, Dreamsicle

    Since my son was little, we have had a tradition of ending our nights by talking about our days. It started as “poopsicle, popsicle, dreamsicle” but it has evolved over the years to include a few additional reflections:

    Poopsicle – Something bad that happened today

    Popsicle – Something good that happened today

    Dreamsicle – Something you want to happen

    Grateful For – Something you are grateful for

    God Bless – Someone you are thinking about that could use your thoughts or prayers

    Mistake – A mistake you made today (because mistakes are opportunities to learn)

    Proud Of – Something you did today that you are proud of yourself for

    Each night, we would take turns going through the list. But for the past few months, I haven’t been participating. My wife has been reading with our son before bed and the reflections became part of their routine. Instead of joining them, I busied myself by cleaning the kitchen or working on the computer.

    I don’t remember exactly when I stopped. It could have been near the end of my last job when I was so unhappy and stressed and just wanted to get out. It could have been after I started my new job because I was so exhausted trying to prove myself to my new team. It could have been any number of times when life got hard and complicated and fast.

    Ironically, it was probably when I needed to reflect the most that I stopped doing it. I didn’t just stop reflecting with my family, I stopped reflecting at all. I didn’t notice the day, I survived it. I spent all my energy moving things forward without appreciating where I’ve been or what I’ve done. Instead of acknowledging the really hard things and being proud of myself for having done them, I moved on to the next thing on my endless list of things to do.

    This Father’s Day, my wife surprised me with a special Japanese tea ceremony. It was a beautiful ceremony in which a teacher described each step as it was demonstrated by his students. He described the ritual of serving the tea, but also introduced a mindfulness aspect from the perspective of the guest. During the ceremony, the guest would inspect the different things in front of her. She would lift the bowl and examine every side of it. Because this moment may never happen again. She may never see the bowl again. She may never see the host again. So she was appreciating this moment and these objects and being mindful and present in the moment.

    Three minutes into the ceremony, I caught myself wondering how long we had been there and how long we had to go. But after awhile, I settled in on the experience. I settled into the space. I noticed the way the host and assistant walked in and out of the room. I noticed how they folded the silk cloths they used to wipe down the bowl. I noticed the way the guest turned the bowl to examine it. I noticed my son watching the ceremony.

    Drink your tea slowly and reverently, as if it is the axis on which the world earth revolves – slowly, evenly, without rushing toward the future. ~Thich Nhat Hahn

    It was as if the world slowed down enough for me to see what was happening. Instead of moving on to the next thing, I was seeing the things that were in front of me. I wasn’t thinking about my to-do list. I wasn’t thinking about work. I was there. I was present. I hadn’t felt that way in a long time. It felt good. I missed feeling that way.

    I have gotten into the habit of doing instead of experiencing. It’s easy to measure a day by how much gets done because there is no end to the list of things to do. But that keeps my eyes focused on the horizon instead of the ground beneath my feet, or noticing the footprints I left behind me, or being aware of who is at my side.

    My son has a serious medical condition that can change our lives or take away his without warning. We are not guaranteed any moments beyond the one we are in. I want to be better and being present in it with my family. I want to share these moments with the people around me. And I want to reflect on them and acknowledge what they mean to me. Because I want life to be about more than checking things off an endless list of things to do.

    That night, I laid next to my wife and son as we put him to bed. “What’s your poopsicle?”, I asked him. Then, we took turns reflecting on our day.

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About

I’m Dave. I write about raising a son with refractory epilepsy.
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