epilepsy dad

Tag: family

  • Reacting vs Responding

    Reacting vs Responding

    Growing up in Florida, I played a lot of tennis. Even though I lived near one of the best tennis schools in the country, I never took any lessons. My friends and I would bring our rackets and a can of balls to an open court and play for hours.

    I wasn’t the best player, but I was able to present a good challenge. My untrained backhand had a severe backspin, making it difficult for my opponents to reach. My serve was chaotic but fast, so it was hard to return in the rare instances when it went in. But the main reason why I was a tough opponent was that I was fast and could get to balls anywhere on the court.

    I started playing more tennis when we moved to the suburbs a few years ago. At first, I took a few lessons and clinics, then leaned in and played a few hours a week. I’ve slowly progressed in my technique, but I still have speed. I can still react. But reacting is exhausting.

    Reacting is instinctive. It’s fast. It’s unconscious. Reacting is about survival, but that can get me into trouble. I might keep the match going, only to put myself in a worse position than before. Reacting begets reacting, which, in tennis, means a lot of running around.

    Responding is intentional. It’s slower, but that intention can create more space. Responding keeps the match going and aims to put me in a better position for the next shot. That looking ahead and control is more efficient and effective.

    When our epilepsy journey first began, all we did was react.

    Seizure. React. Status. React. Medications. React. Side effects. React. Ataxia. React. New seizures. React. New medications. React. New side effects. React.

    There was no time to think, no time to plan, no time to be intentional. There was no space. Every time we reacted, we’d hit the ball back over the net only to have our opponent easily smash it back across the court and force us to rush to reach it. Our opponent was trying to win the match, and every desperate reaction we had was to keep our son alive.

    This went on for years until his condition stabilized, and we could finally catch our breath. Initially, the feeling of not having to react was foreign and unsettling. We had been reacting for so long that I had forgotten there was another way, and I had no reference for what that other way looked like when it came to epilepsy and our son.

    After a while, though, we began adjusting to this new way. The ability to introduce intention into our decision-making has given us the space to catch our breath and make choices that move us forward. Rather than sending him to a school that couldn’t accommodate him, we could take the time and find a school that was right for him. Rather than being afraid to schedule activities, we began living our lives.

    That’s not to say that we don’t still react. Epilepsy is a crafty opponent that can catch us off guard and force us to scramble. But reacting is not the only thing we do, which makes a big difference.

  • My Wife Is A Superhero

    My Wife Is A Superhero

    This summer, my wife and I attended a concert at an outdoor venue outside the city. It was a warm night, the sun beating down on us as we stood in line to enter.

    I scanned the crowd. The energy was good. I noticed a family sitting on the ground towards the end of the line. I didn’t think much of it, other than that the lines must have gotten long enough to reach where they had decided to sit.

    Moments later, there were screams.

    “Daddy!” a young voice yelled.

    I looked over and saw the father of that family lying on the ground. People started to pull away and a small circle formed, watching.

    “Daddy!”

    I turned to see, as everyone else was backing up, my wife dashing towards the sound.

    Security arrived and started moving everyone back. Enough space cleared to see that the man was beginning to come around. My wife was on the ground with a young girl who was crying and calling for her dad and a young boy who stood frozen, watching as people arrived to attend to his father.

    I watched as my wife comforted the children, surrounded by the commotion and chaos of the crowd, watching and whispering as the staff pushed them back. Eventually, the father was sitting up, and I could see that he was talking. A wheelchair arrived. The man made it into the chair, and a medic pushed him through security with his wife at his side. My wife followed, holding the hands of the two children as she continued to calm their distress.

    This wasn’t the first time that I saw my wife step up in this way. She’s done it for our son hundreds of times, reacting to the sound of our son having a seizure and rushing to his aide. She’s done it for her students over the years. And she’s done it when we are out in public, and the need arises. It’s always instinctual, it’s always kind, and it’s always genuine.

    It’s always inspiring.

    The world needs more of that. We’re afraid to step in. We’re indifferent. We’re so eager to attack anyone in our space and to not accept help. We’re too selfish to be altruistic. We’re too polarized to have empathy for the “other.” Stories like this are anomalies, which is why they get so much attention when they happen. Kindness is so rare that stories and videos showing it are treated as curiosities, like catching sight of an endangered species.

    I sometimes take it for granted that not everyone is capable of giving or receiving kindness and empathy. I see my wife’s example and how she instills that same kindness in our son. Because of her, I notice it in the other people in our lives, as well.

    Maybe someone who saw my wife jump in will feel compelled to do the same the next time they see someone who needs help. Perhaps they’ll be inspired to demonstrate even a small act of compassion, understanding, and love. We are capable of such wonderful things, but without more empathy and kindness, we will eventually become the endangered species ourselves.

    After we entered the venue, we grabbed some food and sat on the lawn that overlooked the city. People slowly strolled up the path past us to start finding their seats.

    “There she is!” A familiar voice led my eyes to a little girl with her family in the distance who was pointing at my wife. Her face beamed as she waved. I saw the mother mouth “thank you” to my wife as they slowly made their way along the sidewalk. The father cast a glance of deep appreciation to my wife as they continued on their way. My wife waved back, and I could see her eyes water as she took a deep breath.

    I know superheroes exist because I married one, but we need more of them. If we can find them, or if we can become them, maybe there is hope.

  • Out of Balance

    Out of Balance

    One night before bed, my wife came and sat next to me.

    “I know you’re tired,” she said. “But when you get that tired, the way you check out is to be really short with us, and like we are bothering you. We haven’t been spending a lot of time with our son, and that’s how he sees you at night.”

    Of course, she was right. Looking back, I can see how I responded with one-word answers or a tone of disinterest. Our nights became about checking out by sitting on the couch watching TV while our son played video games online with his friends in the basement. Dinner time was mostly apart, as well, us watching TV while he ate and watched his iPad.

    It was too easy to fall into this routine. The long winter nights, the lingering pandemic, the burnout from keeping everything together leeched our energy and motivation. We checked out long before it was time to check out, and anything that required exerting effort or interest was met with resentment and disdain.

    After my wife called me out, I felt ashamed and guilty. I used the excuse of letting him play with his friends to justify my behavior. “He’s doing what he wants to be doing, so it’s ok to check out.” But it was just that…an excuse.

    I’m glad that he has friends now from school and has more independence to hang out with them virtually. It’s what he wants to do and what he should be doing, especially after many years of isolation.

    It also comes after so many years where we were always “on,” too. We were the caregivers of a child with epilepsy, with all the care and worry that required. We were his emotional regulators when he couldn’t do it himself. We were his teachers and his entertainment when he was too sick to attend school. That was in addition to trying to manage our own lives, jobs, and relationships.

    But moving from one extreme to another threw everything out of balance. That’s not to say that the amount of time needs to be equally portioned. My son is getting older, and we’re not his only source of entertainment or care anymore. He should be spending more time with friends and more time with himself. But that doesn’t mean those two things should be the only things in his life or that they are excuses not to be a parent.

    Or a husband. Sitting on the couch next to my wife isn’t spending time together. We’re relaxing but not interacting. We just happen to be occupying the same space and doing the same thing.

    As in most situations, awareness is the first step to change. I’m grateful to my wife for pointing out where I was and how I was responding to our son. Since then, I’ve been more aware of my tone, and we’ve also started having more family dinners, more walks in the neighborhood, and more ping pong tournaments in the basement. My son still plays with his friends, and my wife and I still veg out on the couch watching television. But, now, those aren’t the only things we do.

  • 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.

  • A Sense Of Time

    A Sense Of Time

    I had a birthday recently. Getting older doesn’t generally bother me but, this time, my birthday felt different. This time, my birthday came with the realization that, realistically, I’m past the mid-point of my life. It made me feel like I was running out of time.

    I’m running out of time to spend with my family.

    I want to spend as much time as I can with my family. I want to look back on my life and not think that I worked too much, or was on the computer too much, or was on my phone too much. I want to look back on my life and know that I was a present father and husband. I want to know that I went to all the baseball games and performances and that my wife and I had date nights. I want to know that I was there when my family needed me.

    There are so many obligations. There are so many distractions. There are so many demands on my time. My birthday made me wonder if I was making the right choices with how I spend my time.

    I’m running out of time to prepare my son for the future.

    Epilepsy through such a curveball at my son’s development, both intellectually and socially. It set him back a few years, and the gap is widening between him and his peers.

    I worry that there will not be enough time to prepare my son for the world. I worry about what will happen to him after I am gone. But sometimes, I worry too much about preparing him for the future that I forget to let him be a kid. My birthday made me wonder if there was a way to help him develop and grow while still giving him the childhood he needs and deserves.

    I’m running out of time to prepare the future for my son.

    I also feel such a sense of responsibility to prepare the future for my son. We don’t know what his life will look like after we’re gone. We don’t know if the seizures will ever be under control. We don’t know if he’ll be able to support himself, or hold a job, or have a family.

    I used to think only about having enough money for a comfortable retirement, but now I think about how I can best secure a comfortable future for my son. There is less time to do that now, and focusing on the future takes away from the present and spending time with my family. My birthday made me wonder if I was making the right choices now to protect my son in the future.

    There is still time.

    Although it originally felt like a sense of urgency, what my birthday actually gave me was a sense of time and the importance of it. It made me question my relationship with the future and the present and ask myself if I am spending my time in each way that I should. It made me realize that I often live at the extremes, ignoring either the present or the future, instead of finding the healthy balance between the two.

    I’m not sure what I’ll do with the gift, but I’m hopeful that I will make the most of it. I suppose we’ll have to see what happens.

    In time.

    Enjoy yourself. It’s later than you think. ~Chinese proverb