epilepsy dad

Tag: parenting

  • I Don’t Have The Answers

    I Don’t Have The Answers

    Every day, I wake up, head to the computer, and write about my life as the father of an amazing child who has epilepsy. I’ve been doing it for more than three years. But I don’t feel like I have any more answers now than I did when I started.

    When I write, it’s from the perspective of a father trying to work out his thoughts and emotions on the page. I am not an expert. Wisdom comes from hindsight but we’re still in the thick of it. And every day I realize more and more of how much I don’t know.

    I don’t know how to minimize his pharmaceutical side effects. I don’t know how long he’ll be on the ketogenic diet. I don’t know whether there is something out there we haven’t tried. I don’t know what new medicine or technology is on the horizon that will help. I don’t know how to prepare him for the world with epilepsy. I don’t know what to do to get my son to stop seizing. I don’t know if he ever will.

    An expert would have answers. An expert would know what to do. An expert would speak from the perspective of someone who has been through it. They know how the story ends or how the tension resolves. I don’t have any of those things.

    But here is what I do know. I know that I love my son more than anything. I know my wife and I are doing everything we can to keep him whole and to give him the best life that we can. I know that I need to be the best man and father for him. I know we need to take each moment as it comes and make the best choice we can with the information that we have. I know we have this moment right now, and I know that nothing else is guaranteed.

  • Safe And Sound

    Safe And Sound

    It was another rough night. My son had a seizure shortly after going to bed and at least three the next morning. Fortunately, he was sleeping in our bed. It’s easier to catch the seizures and take care of him when he is with us.

    Lately, he started doing this thing where, after he has a seizure, he’ll sit up and try to climb out of bed. He’s not awake, it’s more of an electrical impulse that triggers the circuits in his brain that signal him to move. We comfort him during the seizure and then perform early morning Aikido and redirect his impulse to move in the direction of his pillow. Within a few seconds, he is back asleep.

    I went through the process for two of his seizures that morning. Comfort, Aikido, sleep. After the last one, I laid in bed with my eyes open and stared at the ceiling. My mind drifted to the question that I still can’t face.

    What would happen if we weren’t there? Who would be there to comfort him? Who would be there to keep him safe?

    The idea of him doing this alone seems impossible. The idea of him never being able to be on his own is heartbreaking. The thought that I will someday not be here to take care of him, to keep him safe, and to comfort him is what keeps me awake.

    The early morning mind is cruel. It is also calculating. It takes advantage of my incoherence to pose unanswerable questions when my defenses are down. It plants unanswerable questions and then sits back to watch the show.

    The two solutions I usually come up with are curing epilepsy or becoming immortal. One is just as likely as the next but neither is likely be to solved in my lifetime. And so I am left with the fear of the future. Not for my sake, but for his. Because I was supposed to be the one that took care of him, that showed him how to be a good man and sent him into the world to make his own way.

    But I don’t know how to do that when I watch his body seize over and over. The more seizures he has, the more impossible it seems that he’ll be able to make his own way. I’m fighting back the inevitable reality that no matter what I do, I may fail.

    I hope I’m wrong.

    But even if I’m not, I’ll never stop fighting.

  • Questions Without Answers

    Questions Without Answers

    Like many fathers, when my son was born, I had a list of things that I wanted to teach him. I wanted to be the sage, the guru that imparted to him wisdom drawn from my life experiences. I looked forward to the opportunity of leaving him feeling like his old man was a fountain of knowledge for all things. I longed for the bond that the transfer of knowledge would create between us.

    How do I tie my shoes?

    How do I throw a ball?

    How do I tell a joke?

    How do I ride a bike?

    How do I catch a fish?

    How do I program a computer?

    How do I ask a girl out on a date?

    How do I drive a car?

    But after he was diagnosed with epilepsy, I began to fear the questions that I knew he would eventually ask. I went from wanting to be the person he went to for answers to the person afraid to disappoint him when he asked questions for which I didn’t have an answer.

    Why is this happening?

    Will it ever go away?

    How do I live with epilepsy?

    These questions may be the biggest questions that he will ever ask because they are the biggest questions that I have ever asked. I’m also on a search for answers, but I don’t think I’ll have them before he poses the questions to me because not every question has an answer. We may never know why this is happening to him, but it is clear that this is our path. We may never know if it will go away, but we know that is here now. And we may not know how to live with epilepsy down the road, but we are doing the best we can today.

    Rarely does life go according to plan, but we are facing a life that can’t be planned. How my son is each morning, depending on seizures and side effects, determines what we can expect from the day ahead. It’s impossible to predict anything in the future when you can’t predict the next day.

    In the beginning, this uncertainty shut us down. I’m not sure it could have gone differently when my son was first diagnosed with epilepsy because we were fighting for his life. But even after he was stable, we were consumed with finding answers. After four years, it has become clear that there aren’t going to be any. But instead of letting that pull us back into hopelessness, we’re trying to allow it fill us with gratitude for what we do have. Because we have today, and for a time we didn’t think that we would even have that.

    I went into fatherhood expecting to show my son the things he needed to know. But maybe the most important thing I can show him is how to live without having all the answers.

  • 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.