Looking Back

We had a friend over recently and showed her a video from one of my son’s baseball games. We streamed the movie from my Google Photos account through my phone on to our television. Once the video was done, I pulled up another video from the library because most of the pictures and videos from my son’s entire life are stored there. We watched a silly hockey battle video we made when my son was two. A video of our family sledding in the Rocky Mountain National Park when from when we lived in Colorado.

Using these devices and technology, we don’t have to remember anything because they remember everything for us. We can type a word in to a search bar and pull up a list of memories. We can replay our lives in sequential order in a level of detail that was unimaginable even a few decades ago. Now, our lives can flash before our eyes a`t the push of a button.

Sometimes when we look at these memories, it’s like my son is seeing them for the first time. Years of his life are covered by a thick fog. Sometimes he can make out shapes if he tries hard enough, but mostly it’s just a blur. He likes seeing the videos because he likes the idea that he did those things. Meeting a football player. Getting high-fives from hockey players on their way on to the ice. Seeing the world from the top of the Empire State Building. But they’re in a convoluted state somewhere between first person and third person, but not quite either.

While it’s amazing to have these memories so readily available and the ability to look so far back into our lives, it’s also a curse. It means we can never forget those things that we might want to forget. When Google Photos or Facebook offers up a memory, they can sometimes be painful. Like the time he was in status for days and we almost lost him. Or the time he was toxic on a medicine and couldn’t move his body for two days. Or they can be reminders of a time before my son was diagnosed with epilepsy that forces me to reconcile that there was a before and that there is an after.

I’m glad that he will have the digital versions of his memories so that he knows we did everything we could to make his life special. I want him to be able to look back and know that, even though his life was sometimes hard, we didn’t let epilepsy stop us from living our lives. And, even though some of the memories can be hard, I’m grateful we have them, too. Because they also serve as a reminder of how far we’ve come.

May 29, 2018
Not Feeling “Less Than” Because Of Epilepsy

One of my fears for my son is that the world will make him feel “less than” because of his epilepsy.

There is a quote by Temple Grandin where she says “I am different, not less,” referring to her autism. I like the sentiment of her message. Having a condition like autism (or epilepsy) doesn’t make one less of a human being or less important than anyone else. But “different” doesn’t go far enough to describe the impact that epilepsy has on my son. “Different” is blonde versus brunette, hazel eyes versus brown eyes. Those differences are superficial. Epilepsy affects every aspect of his life, from his behavior, to how tired he gets, to the food that he eats, to how he learns and how he feels about himself. Having epilepsy is more than about being different. It’s a vital part of understanding my son.

I struggle with balancing the importance that epilepsy has on his life with just saying that it makes him “different.” I want to hide his condition to protect him from the people who will use it as ammunition to attack his sense of worth. At the same time, I want to share that part of him with the world so that it can see how special he is. But I know I can’t have it both ways. I know that the tightrope between protecting him and showing the world who he is will get harder to walk as he gets older. The more he shares that part of himself, the more vulnerable he will be to the people around him that don’t understand or who are looking to exploit his condition as a way to boost their own perceived worth. At eight, the jabs are more innocent. At sixteen, the jabs will be meant to injure.

So what is the answer? Maybe my son will grow out of his epilepsy and never have to deal with feeling different when he is older. It could happen, but I’m not betting on it. Even if it did happen, though, that’s not the answer. I need to continue to build him up, to help him understand his value, to understand that his epilepsy does make him different but that it does not make him “less than” someone who doesn’t have epilepsy. I need to continue to reinforce that message until he accepts it for what it is…truth. It might not feel like the world’s truth, but it must be his.

May 22, 2018
In The Moment

I remember a few months ago sitting on the floor holding my son who was in the middle of an angry tantrum. I don’t recall what set it off but he had clearly lost control. His eyes were glazed over and he was saying hurtful, mean things while trying to hit me. It was an all too familiar Jekyll and Hyde moment when my son became someone else.

I sat there, holding him, and tried to not get hurt or become angry by what he was saying and doing. I remember thinking “This is our life now.” Things were never going to change. Things were never going to get better. For the rest of my life, I would need to be there to shield the world from my son.

Even when this episode passed, I felt like I would only be waiting for the next one. And there was a next one. And another after that. But with each of those episodes, I began to notice the moments in between. Those moments when we weren’t on high alert. The moments when we might have looked like a normal family. I tried to let myself believe those moments would become our new normal, but that didn’t happen, either.

My mistake was treating these highs and lows and my feelings and reactions to them as a permanent thing. When I was sitting on the floor holding my son, those fears and emotions were very real and very consuming. They were all I could see. When we were happy and hopeful, I held on to those feelings tightly. They were all I wanted to see. But in both cases, the moments passed. Those feelings fell into the stream of time and it carried them away.

The current of the stream is strong and unbiased. It takes away the good and the bad. When it takes away the good, it’s always faster than I want it to. Those precious moments sometimes disappear before I can appreciate them. When it takes away the bad, it’s never fast enough. The pain and heartache seem to consume me and linger longer than I think I can endure.

I’ve tried to control the stream. I’ve tried to hold on to those good moments longer by slowing the flow. But I wind up focusing too hard on not letting go that I wind up not being present. While I struggle to hold on to that one moment, others are floating by without notice.

I’ve tried to push away the bad moments. But the more attention I give them, the more they seem to stay with me. Instead of being pulled away by the current, they bob up and down in front of me, creating a compounding log jam of moments behind them.

The hardest thing to do is to give up trying to control every moment and, instead, to be in the moment. To be aware of how the moment affects me and my reaction to it. To be present in each moment and to take what the moment offers but then to let it go.

May 15, 2018
A Different Life

There have been times when I have wondered how my family’s life would be different if my son didn’t have epilepsy. There have been times when I have wondered what it would be like even if his seizures were under control, or if he didn’t have the side effects that he does from his medications. But a television show forced me to confront a much tougher question.

I’m a big fan of the show Black Mirror, and I found a similar show on Amazon Prime called Electric Dreams, based on short stories from Phillip K. Dick. In an episode called The Commuter, the protagonist is a father who has a son prone to violent outbursts. As the story develops, the father is offered the chance for a different life, an easier life, in which his son was never born.

The Commuter, Philip K. Dick’s Electric Dreams, Amazon

As I watched the episode, I thought about turning it off. The story hit too close to home, because I’ve also thought about what my son’s future will be like if we can’t get his seizures under control. I’ve wondered what his future will be like if his emotional and behavioral issues weren’t able to be controlled. And I was ashamed that, when things were at their worst, I also wondered where my life would be if my son wasn’t born.

Even writing it down, I feel sick. I’m looking at those words and I’m not sure where to go with them. I want to spin it to be about my son because this wasn’t the life that I dreamed for him. But, while that is part of it, there is also a selfish component. When we were having to hold him to control his angry, dangerous outbursts, my thoughts went to darker places. I thought about having to do that for the rest of my life. I thought about someday having to put him in an institution or visit him in jail. I dreaded the phone call where someone on the other end tells me something that my son has done that we can’t excuse or take back. But those thoughts weren’t about what his life would look like. They were about what my life would look like.

Our life is hard sometimes. It’s also amazing, and we’re very fortunate in so many ways. But it’s also impossibly hard. It’s hard to watch my son struggle every day. It’s hard to feel like everything is always out of our control. It’s hard to keep having conversations about what to try next because everything we’ve already tried didn’t work. It’s hard to hold on to hope for a future that is different than what is in front of us. It’s hard to not let fear take over and seek out alternative paths.

But having the thought isn’t the same as wanting it to be true. If I were given the choice, I would choose this life every time. I would choose my son every time, because being his father is one of the best things about my life. Being his father has made me a better person and a better man. Being his father has opened me up in ways where I can have these impossible thoughts and come out the other side knowing that I am where I am supposed to be. And every day, when I see his face, I also know that I am where I want to be.

May 8, 2018
All The World’s A Stage

Recently, my son performed in his first school play. School has been physically, mentally, and emotionally exhausting for him this year. He likes school, but it takes a huge toll on his body and mind doing full days. In an otherwise difficult year, the play was the thing he most looked forward to, so we adjusted his schedule to allow him to rehearse with his class and have a part in the show.

He worked hard rehearsing for his role. Memorization is extremely difficult for him, but he practiced reciting his lines almost every day. We’d catch him at random times singing the songs from the show as he played with his toys or started to drift off to sleep. It was the first thing in a long time that he had that was his and that he was excited about.

When the day of the show finally arrived, it started with six seizures before breakfast. He had big circles under his eyes as he slowly crawled out of bed. As it goes with epilepsy, we didn’t know why he had more seizure than normal. But we let him rest most of the day with our fingers crossed that he would feel well enough to go to the show. Even after an afternoon nap, he still seemed tired but, thankfully, his excitement and adrenaline gave him the boost he needed to make it out of the house.

My wife and I sat in the audience anxiously waiting for the show to begin. I had a big smile on my face when I saw my son peak his head around the curtain. I heard the kids getting into position and felt my heart start to beat faster. Finally, the curtain opened, and I thought we made a terrible mistake letting him do the show that night.

I could see by the look on his face that he wasn’t really present. The energy that got him out the door seemed gone. Most of the time, he looked lost on the stage, bouncing between children to try to find the spot where he should be. I felt helpless every time we made eye contact. I felt angry that they didn’t set it up better or give him a buddy to remind him where he should be. While these thoughts raced through my head, I tried to keep a smile and to be a friendly face in the audience for him.

My wife and I struggle with finding the right place for my son. Not just with school, but finding environments that are safe for him and that try to understand what life is like for him. Watching him on the stage, unable to find his place, brought that fear of him never finding that place center stage. It acted out my anxiety of what life will look like for him as he gets older because the world doesn’t know him and doesn’t understand him. I saw on that stage a future for my son where he spends his life bouncing around, bouncing off people, endlessly lost.

When the show was over, my son came running off the stage and into our arms. He was happy. He had just done something impossibly hard and felt good about himself. At that moment, everything I was feeling melted away and I held him and told him how proud of him I was.

It’s hard to not get lost in those visions of what the future will look like for my son. There have been too many times where I get swept up in those feelings and miss what is happening right in front of me, in the present where my son needs me to be. It’s in those moments where he continues to show me what he is capable of and remind me that the future is unwritten and filled with as many possibilities as it will be limitations. The only thing that is certain is what we have at this moment. As I held my son and felt his joy, I didn’t want to miss it.

May 1, 2018

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About

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