epilepsy dad

  • Playing with Minecraft

    Playing with Minecraft

    “Daddy, watch this,” my son said. We were sitting next to each other on the couch, and he turned his iPad to face me. I looked over and saw a house made from square blocks of wood, stone, and glass. He moved his equally blocky character closer to the door and taped the screen. I heard the chime of a doorbell, and my son smiled.

    The world of Minecraft.

    We introduced him to the game a few years ago. Between his love of Lego and other video games, I was sure it would stick, but it never did. He couldn’t articulate why, but I suspected it was because of the game’s open-ended nature. With Lego, there is a plan. With Fortnite or a sports game, there is a goal, and there are rules. With Minecraft, a player has to come up with rules and goals on their own, and I think that was challenging for him.

    Then, a few months ago, I noticed him watching YouTube videos about Minecraft. He would borrow my iPad to watch videos on it while he played the game on his device. He started to show me what he was building: hockey rinks, and skyscrapers, and elaborate homes with secret passages and trap doors. These creations would sometimes take hours to make, but he was into it.

    One day, we were figuring out how to connect to the same Minecraft world so that he could play online with friends. Once my character appeared in his world, he asked if he could show me around.

    “What’s that?” I asked.

    “That’s iron ore, ” he replied. Then he built a furnace, and he showed me how to melt the ore down into ingots. We used the ingots to craft other items like pickaxes and swords. It was very involved, but he knew the recipes. He knew the materials, the creatures, and the mechanics.

    I could see how proud of himself he was. He was the expert, and he was teaching me. So much of our life is the other way around. We have to remind him of basic things. Sequencing, processing, and retention continue to be a struggle. Even in Minecraft, he forgot some of the words. But it was reassuring to see that, with enough repetition, he could learn things well enough to be able to teach them to me.

    I didn’t realize how badly I needed to be reassured. Even though we’ve made positive changes in the last few months with the new house and the new school, the tests show regression. I can see other signs in him that some things are getting harder, too. I’m supposed to help him, but I feel helpless. I’m supposed to protect him, but I can’t protect him from this.

    But these moments we have where I see that look on his face fills my heart with joy. I know my love, my time, and my presence are what I can give him and what he needs from me. That is what will carry us through good times and bad. That is how I help, whether it is in person or in digital form in a world of his creation.

    “There, ” he said. My character stood in front of his, fully armored and with a sword and shield. “Now, we are ready for The Nether.”

    “What’s The Nether?” I asked nervously.

    He smiled. “Don’t be scared, daddy. I’ll protect you.”

  • Slow Down

    Slow Down

    I’m standing with my left foot on the edge of the baseline. I bounce the bright yellow tennis ball a few times with my left hand while my right hand dips low, holding my racquet. I’m ready, so I steady the tennis ball before tossing it high into the air slightly in front of me. I rock backward on my heel, then forward, lifting my racquet to meet the ball’s descent. Contact.

    “No, no, no,” my instructor says through his thick French accent. He points upward at the ball that has soared high enough to qualify as a space flight, and that still hasn’t completed reentry.

    “Too fast. Watch.”

    He takes my place on the baseline and tosses a ball into the air. His movement is controlled and intentional. The racquet methodically completes its arc and makes contact with the ball, sending it across the net where it lands in front of the service line.

    “This is you.”

    Again, he tosses a ball into the air. But instead of the slow, intentional movement, the racquet disappears into a blur of speed and sends the ball crashing into the fence on the far side of the court.

    “When you go slow, you are present…you can control. When you go fast, you can’t.”

    “Story of my life, ” I think to myself.

    I’ve never been good at slowing down. I’m nervous and anxious and always feel like there is something I should be doing. I’ve created lists upon unending lists of the things that I need to do. Not “want” to do. Need. Must. Obligated to. Compelled to.

    But there is only so much time, so I race from one thing to the next. Sometimes, I don’t quite complete the task that I’m doing or do it as well as I could have, but, usually, I don’t look back to check. Checking slows me down. And there is still so much to do.

    Often, I don’t remember details because, as it turns out, I’m not there at all. And that, I realize, is part of the problem, especially when there are other people involved. What is the point of doing something with my wife and my son if the goal is to do it so that I can move on to the next thing? I’m not there with them if I can’t slow down enough to be present with them.

    None of us knows how much time we have in this world. With my son’s condition, that is a fact of which I am too well aware. It should serve as a reminder that it is the quality of the time we spend together that matters more than the quantity of the things we do. But, as my wife has pointed out too many times lately, I haven’t always been showing up that way. I know she’s right.

    Awareness is the first step of change. Acceptance is the second. I’m working on that part. I know it’s time to slow down.

    The instructor backs away, and I retake my place on the baseline. I bounce the ball a few times before tossing it into the air. I raise my racket slowly towards the ball. Deliberately. Intentionally. I can feel that my arm is extended. I can feel it when the racquet makes contact with the ball. I watch as the ball flies over the net and lands in the box. It’s a different experience. And it’s the same type of experience I want more of with the people around me, too.

  • Like Everyone Else

    Like Everyone Else

    A few weeks ago, we went to a birthday party for one of my son’s friends. It was a small gathering, done safely. We didn’t know the other family there, but they were very friendly, and the kids all got along.

    Near the end of the party, we gathered together and sang “Happy Birthday.” After the birthday boy blew out the candles, the other children eagerly reached for a cupcake. My son, however, was sitting off in the corner. I walked over to him. “Hey pal, you ok?” I asked, knowing what the answer would be.

    “I don’t feel included.” The words came from his mouth and punched me in the heart. It had been so long since we attended a birthday party that I forgot to make my son a keto-friendly cupcake.

    I sat on the bench next to him and put my arm around him. “I’m sorry, ” I said. “I forgot.”

    I told him I would make it up to him and that I would make him a cupcake as soon as we got home. But I knew it wasn’t the same thing. He’d be eating that cupcake at home, all alone, instead of surrounded by his friends, participating in what they were doing, being just like them. Right now, he wasn’t included. He was on the outside.

    He’s been on the ketogenic diet for so long, and he started so young that it seems like it has always been this way. I take for granted that he’s always had a different meal than us. But, as he gets older, he’s noticing more how that makes him different. At his new school, the other kids have sandwiches and bags of chips for lunch. He brings keto ice cream and a few chips. They have cookies for dessert. He has cheese or macadamia nuts. When they have special events or cooking, he has to eat the substitute we send in. He never gets the same.

    Change is on the horizon, though. After more than seven years on keto, we’re moving to a modified Atkins diet, opening a new world of food for him. The other day, we found a low-carb bread and made sandwiches for lunch. As we sat at the table, I smiled and watched him close his eyes and take a big bite out of the middle of his sandwhich. He chewed for a few seconds, then opened his eyes and looked at me, smiling. “I can have sandwiches for lunch at school, ” he said. “Just like everyone else.”

  • Then Things Changed

    Then Things Changed

    This is the first time in months where I have sat down to write.

    Before I did, I skimmed my posts from earlier this year. I wanted to be reminded of where we were. Our family felt isolated and trapped in the city, and there was no hope of moving. My son was struggling with his virtual school, and there was no hope of finding a way of learning that would work for him.

    I wrote those posts as a way to process my thoughts. I wrote those posts as a way to ask the universe for help. I wrote those posts because I had to get those feelings out. They were real. They are real. Putting them down in writing felt like the last act of acceptance that nothing was going to change.

    But then things did change.

    I’m writing this post in our new house. I’m writing this post early in the morning before my son wakes up and gets ready to go to his new school that is only a few miles away with kids that have challenges just like him. I’m writing this post the day after my son spent hours in the yard playing with other kids from the neighborhood who didn’t treat him like he was different at all.

    The contrast between where we were and where we are is surreal, but I know things won’t always feel this way. My son is still seizing every day. The cognitive, social, and emotional gap between him and his peers is obvious, and it is growing. And the one constant thing in our epilepsy journey, for better and for worse, has been change.

    At this moment, though, I am immeasurably grateful to have landed where we did, when we did. Because we needed it. Because we are together. Because we can breathe. And because for the first time in a long time and despite the struggles he faces every day, my son is happy.

  • Stepping Up To The Plate

    Stepping Up To The Plate

    There is a screen saver on our television that lets us use our own photos. One of the pictures we used that has come up in rotation is from one of my son’s baseball games. He’s standing at the plate, adjusting his helmet with his left hand while his bat hangs down from his right.

    It feels like that picture was taken in another life so long ago. But it’s only been a few years. “Only,” as if that is an insignificant amount of time.

    He said the other day that he misses baseball. I miss him having baseball. I miss him playing a game that he loves, surrounded by other kids being kids. I miss the look of his “game face” or the excitement and expression on his face after he got a hit. I miss his laugh as he and the other kids ran around the bases at the end of the game and created a pile-up as they slid into home plate. I miss retelling the best moments from the game in the car on the way home.

    We had signed him up for this season, hoping to introduce a bit of normalcy back into his life. But because of an abundance of caution for his health and other changes on our horizon, we decided to pull him.

    I still haven’t told him.

    Seeing that picture on the screen is my reminder, not just to have the hard conversation but also about how isolated he is. Baseball was one of the only places where he showed up as an equal. That feeling and those bonds that he made on the field were the same as the other kids. But the other kids created bonds in school, as well, that my son missed out on because of his long absences over the years.

    He plays Fortnite with a few of his former classmates, but I can hear the conversations sometimes, and, with a few exceptions, he is treated as an outsider. Many of the kids who developed those classroom bonds still go to school together or play sports together. They have the real-world bond that carried through to the online world. It’s hard to compete with that when the only interactions that you have are virtual ones.

    It’s the same reason my son is struggling with a virtual school. In addition to the difficulty many of us have to stare at a screen all day and the mind-numbing burden of an all-day video call, he’s getting zero in-person social interactions. He’s not making friends, even though he receives online social skill classes because it’s hard to build those relationships and connections in a meaningful way when the person on the other end is only a face on a screen or, worse, one of the dozens of faces on a screen.

    But even though the other kids have stronger bonds and sometimes exclude him, he still sends that invite to play online with his friends. Despite feeling like an outsider and that sting that comes from not getting picked, I’ve seen my son be so kind and generous and play the game modes that his friends want to play. I’ve also seen him put his own needs out there and ask to play the games he wants to play.

    He still wakes up every school day and sits in front of that screen, and he tries to follow along. He fights through his exhaustion and attention issues to participate in the class as best as possible. In both cases, despite the challenges, he shows up with an open heart and a willingness to learn, be included and connect. Like the picture on our television, every day, he steps up to the plate.

    And I couldn’t be more proud.

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About

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