epilepsy dad

Category: parenting

  • 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.

  • 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.

  • Trapped

    Trapped

    The pandemic has us feeling trapped.

    We’re trapped in isolation. It’s been almost a year now since we’ve been able to hang out in person with our friends. It’s been almost a year since I’ve stepped into the office and looked across a conference table at a colleague. It’s been almost a year since my wife and I have sat down in a restaurant or gone on a proper date.

    We’re trapped in the city. We’ve stayed downtown because we spent so much time in the nearby hospital and because I work a few blocks away, so it saved us time and money. But our small condo feels smaller since our son and family have grown with the addition of a (not-small) seizure dog. We’ve been thinking about finding a place with a little more space. However, the exodus of people leaving the city has home inflated prices in the suburbs. Few people want to move into the city during the pandemic and no one knows how much cities will bounce back if more people are working remotely at the end of this. As a result, we can’t go anywhere.

    We’re trapped in our schools and our jobs and our patterns. We’re trapped by our trauma. We’re trapped by our pasts. We’re trapped by our circumstances. We’re trapped in our lives.

    The sense of being trapped is suffocating. The air is slowly escaping our lives and leaving us struggling for breath.

    We occasionally find a way to break free. We escaped to Maine last year in a desperate attempt to catch our breaths. But, ultimately, we were pulled back into the real world and felt the trap closing tighter.

    As much as I would like to believe that this sensation was caused by the pandemic, the reality is that we were trapped before the world started getting sick. We were already isolating ourselves. We had already let the difficulties we were facing take away our freedom, our connections, and our air. This was our pattern before it became everyone else’s pattern, too.

    The question, then, is when the world opens back up, what will we do? Have we learned anything during this time of forced confinement that will cause us to do anything differently? Will we have more energy to do anything differently? Or will we continue on, doing what we did before and during the pandemic? Will we choose to stay trapped?

    There is a quote that says, “Water, when trapped, makes a new path.”

    I suppose I should try to be more like water.

    But it takes so much physical and emotional energy to do something different. It takes energy to change mindsets. It takes energy to pretend, and to move forward. Trapped water builds pressure and it uses that energy to push through obstacles. Pushing through our obstacles and making a new path takes energy that, most days, we don’t have.

    I guess I just imagined that it would be different. I imagined it would be easier. But it’s not.

    Maybe that’s okay. Maybe that’s part of the journey. Maybe it’s enough that we’re making it through right now. Maybe it’s enough that we’re still here, still living, still trying, and still together. I’m so grateful for that.

  • Our Story – National Epilepsy Awareness Month

    Our Story – National Epilepsy Awareness Month

    Recently I attended a class where I needed to give a 4-minute talk. Inspired by National Epilepsy Awareness Month, I took the opportunity to share our story with my classmates.

    A little over 6 years ago, my company offered me a new position that would move my family from Colorado to Philadelphia. I had been to Philadelphia for work many times, but my family’s first visit was shortly before our move. We flew there together and my wife and son explored the city and hunted for houses while I worked.

    One night, after a long day of house hunting, we went to an arcade to play games and have dinner. My son had a fascination with Guitar Hero and spent a good chunk of the night shredding the plastic guitar to AC/DC.

    When we were done, we headed down to the exit to wait for a taxi. I remember there was a thunderstorm, and we stayed inside the lobby watching the rain and lightning. Before it arrived, my wife and I both noticed that something was happening with our son. He stopped responding, and his body had stiffened. At first, we thought he was joking but, when he wouldn’t come around, we knew something was wrong. I held my son as my wife called 911. Instead of a taxi, we left the arcade in an ambulance and headed to the hospital.

    Finding yourself in a strange city, late at night in the hospital waiting for the doctor to tell you what happened to your toddler is an experience that I wouldn’t wish on anyone. The rooms were full so my son was on a bed in the hallway as we watched the chaotic energy of an urban hospital and the activity around us. Eventually, the doctor confirmed what the paramedics had told us what likely had happened, and that was that my son had a seizure. Because it was his first one and because he was slowly recovering, they sent us home.

    A few days later, we left Philadelphia to go back to Colorado. There were no other signs or lingering effects from his seizure, so life went back to normal. We packed up our house and headed east.

    Once we moved, we spent time exploring our new home. Eventually, we stopped worrying about epilepsy and seizures. But epilepsy wasn’t done with us. A few months later, my wife and son were boarding a plane to visit friends in California when my son had his second seizure. Fortunately, the flight crew was able to get my family off the plane and they found themselves in another ambulance, this time headed to the children’s hospital.

    The second seizure came with an official epilepsy diagnosis. At the time, I didn’t really know what epilepsy was other than what I had seen in the movies. Even though seizures and epilepsy are common, that is true for many people, so I want to share some information with you.

    First, what is epilepsy? It’s a seizure disorder characterized by uncontrolled seizures.

    More than 3 million people in the United States have epilepsy. 1 in 26 people will develop epilepsy in their life. 1 in 3 people lives with seizures that aren’t controlled by treatment. Sometimes, there is an identifiable reason why someone has seizures, but 6 out of 10 people with epilepsy don’t know the cause.

    Unfortunately for my son, the last two bullets apply to him. We have not been able to figure out what causes his seizures and, even though we’ve tried different medicine, put him on a special diet, and had a device called a VNS implanted, he still has seizures almost every day.

    The reason I wanted to use my time today to talk about epilepsy, in addition to it being such an important part of my life and my family, is because November is also Epilepsy Awareness Month. If you didn’t know anything about epilepsy before today, I hope I gave you a glimpse at what it is. And if you didn’t know anyone before today who was affected by epilepsy, now you do.

    While epilepsy is a big part of our life, I wanted to end my talk on a positive note. While my son does still has seizures, he is also a very happy, energetic 11-year old. He loves hockey and baseball, and last year he was selected to the All Star team for his baseball league. This picture is one of my favorites, and that’s him sliding into home plate underneath the tag of the catcher. He scored and wound up receiving the game ball as the game MVP.

    Thank you for listening to our story, and if you have any questions or want to learn more about epilepsy, please reach out!

    Resources:

    Epilepsy Foundation – National Epilepsy Awareness Month

    Epilepsy Foundation and Epilepsy Foundation of Eastern Pennsylvania

    Epilepsy Dad

     

  • Maine 2.0

    Maine 2.0

    For the second time during the pandemic, we’ve run away to Maine.

    I’m starting this post on our first morning in the cabin. My son is at the dining room table, doing virtual school with my wife. The fog is starting to lift, and I can see out the window through the trees and across the secluded cove of fresh seawater that salts the air.

    It’s surreal. Many years ago, my wife and I talked about living a more nomadic life, traveling around and doing work and school wherever we happened to find ourselves. I would work in a kitchen somewhere in Europe, and we’d drink wine and play music at night. Back then, I cooked more adventurously, and we drank, and we played more music.

    But over the last few years, the practical part of me that optimizes for safety and comfort, when given a choice between planning that future or turning it into only a dream, chose the latter. I needed a job with good insurance. We needed to be near a hospital and a pharmacy. My son needed special accommodations at school. In a world with unpredictable seizures, changing medications, and endless speed bumps, we needed stability anywhere we could find it.

    Over the years, as my son’s condition started to normalize, even if not stabilize, we’ve started to venture out further. At first, it was back to Colorado or Florida, places where we always had the security of friends and family around us. We’d go for a week at a time to the Poconos, still only a few hours drive back to the city and its services.

    Our first big trip was to Hawaii, where we stayed for almost two weeks. Even though we were with friends, it was the first time since the seizures began that I felt like we were disconnected from the constant watch and care of our safety net. Sure, there were seizures on the plane and in the hotel and on the beach, but we embraced the adventure.

    The next big trip was to Panama. Again, we went with friends, but this time we spent part of our time deep in the mountains away from any major city, and the other part on an equally isolated island. There were seizures on the plane, and in the mountains, and on the island. But I felt even more disconnected there but still safe.

    When the pandemic started and we knew that I was going to be working remotely for the foreseeable future, we decided to pack up and head to Maine for a month. It was just us in a small house in a remote town along the ocean, but I felt like we were actually living in another place. The seizures followed us there, too, but I was working, my son continued his school work with his tutor, and my wife was writing and working. We visited the grocery store, cooked, found a pizza place we liked, and continued our lives, just in a different place. Now, we’re doing it again.

    I don’t know if that truly nomadic lifestyle will ever be in the cards for us. I hope to embrace more working from home, assuming working from an office is ever a thing again. But that voice in my head is also whispering words like stability, and doctors, and pharmacy. It’s telling me that the world is going to get back to normal, and that a job requires an office to go to, and that we need the safety of benefits and insurance.

    But it is in those moments where maybe I need to remember where we’ve been. More so, I need to look around at where we are right now. And maybe I should step outside and go for a walk and reconnect with being disconnected. And be open to a different future where everything is still possible.