epilepsy dad

Tag: parenting

  • What Can’t Be Undone

    What Can’t Be Undone

    The suggestion to implant a VNS was made by our neurologist years ago. But there were still options to try so we held off. Unfortunately, CBD was not our miracle and other medications didn’t help. The seizures kept coming and we ran out of things to try.

    When our neurologist brought up the VNS again, I felt the overwhelming weight of the decision squeezing the air out of me. If it even has the potential to improve his quality of life, she asked, shouldn’t we try it? Of course, she was right, but that knowledge didn’t help me breathe.

    Neither did having an amazing surgeon in one of the best children’s hospitals in the country. Neither did the love and support of friends who would try to reassure me about how safe surgery and anesthesia are. Neither did my wife who held everything together when I couldn’t.

    It wasn’t the mechanics of the surgery that occupied my thoughts. It was the idea of cutting into my little boy. It was the permanence of it all. It was the thing that can’t be undone.

    We can wean off a medication that doesn’t work. We can stop the ketogenic diet. If years from now his seizures miraculously go away, we could stop everything and pretend that all the hard things about his childhood didn’t happen. There would be no signs, no trace. I could live in denial about how traumatized I was by this experience.

    But the surgery forced me to confront the fact that these things aren’t going away. That the magical, unburdened life I wanted for my son is not going to materialize. That I can’t fix this or make it go away. That this is real, and that the future for him will include challenges brought on by his condition. That I’ve somehow failed him.

    From the time the decision was made to the time they wheeled him away hopped up on “giggle juice”, I pushed my feelings down. I was practical but emotionless. I showed up for the appointments and answered the questions as he was prepped for surgery, but I wasn’t really there. I couldn’t be. I had to push it all down just to appear strong enough to make it through.

    Even after his surgery was over, I had a hard time being present and acknowledging what had happened. I had a hard time looking at his scars. They were bigger than I thought they would be. Instead of small ones hidden by clothes, they’re long and visible. I looked away. I caught a glimpse of the device itself, raised under the skin and I looked away. It’s more than just being squeamish, it’s a spotlight of reality shining into my eyes and blinding me.

    I worry that he’ll think I can’t look at him. I worry that he’ll feel like he did something wrong or that there is something wrong with him that is causing this reaction from me. I’m worried that I can’t get over my own hang-ups and be there for him when he needs me.

    I tried to explain to him the feelings I was having but he didn’t understand. I didn’t, either, until I started to unpack them. But I still don’t know what to do with them. I want my acceptance to turn the spotlight that was blinding me into a beacon that brings me to him. But instead, it feels like the light has turned off. It’s not repelling me but it’s also not drawing me in. Instead, I’m left in the darkness trying to find my way.

    But I can hear his voice. And I hear my wife’s voice. They’re calling me. And so I’m pushing through the blackness, the emptiness, to find my way back to them. It’s scary and impossibly hard. But I can hear them and they need me. I can hear them, and I don’t feel alone.

    I’m on my way.

  • 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.