epilepsy dad

Tag: epilepsy

  • What Emmet Did On Summer Vacation

    Earlier this summer, we took a family trip back to Colorado.

    Colorado has always been a special place for our family. My wife and I met there, were married there, and our son was born there. Even though we left when he was four, my son has maintained a strong connection to the state, especially its sports teams. His favorite teams are all Colorado teams.

    The week we visited, two things were happening. First, the NHL Stanley Cup Finals were happening in Denver between my son’s favorite Colorado Avalanche and my favorite Tampa Bay Lightning. There was also a Colorado Rockies baseball game later in the week.

    When we planned the trip, we wanted to attend both games. These would be our service dog Emmet’s first sporting events, but this was also our first trip flying with him.

    Flying with Emmet was pretty straightforward. There was paperwork to fill out, and we talked to an airline representative when we booked the tickets, who secured us seats in the bulkhead. On some airplanes, the bulkhead usually has extra leg room, so I expected Emmet to be able to lay down comfortably during the flight. However, on the plane we were on, the bulkhead was just the first row of economy seats behind the first-class seats. There wasn’t much extra space. On the trip out to Colorado, my wife was already there, so it was just my son and me on the plane, which meant we only had two of the three seats in the row. Fortunately, the woman who occupied the third seat was extremely friendly and didn’t mind when Emmet, after much fidgeting and shuffling, finally decided to lay down under our legs.

    When we landed in Denver, we were excited to get off the plane. Since the flight was a few hours long, our first stop was the pet relief area. The one in Philadelphia was tucked in a corner, fake grass with a fake fire hydrant but well maintained. The pet relief area in Denver was a different story. It was a small room that reeked of ammonia and urine. Emmet started pulling towards the door as soon as we entered the room, and, no matter how hard I tried to encourage him, he wouldn’t pee. I didn’t blame him. Fortunately, I could take him outside once we reached the baggage claim area.

    The hockey game was next on the calendar. I contacted the arena to ask for guidance on bringing a service dog, and the staff was very helpful. Tickets were difficult to find, and there were no accessible seats available, but the box office suggested that we check the day of the game to see if any opened up. They didn’t.

    When we got to our seats high up in the arena, we were in the middle of the row, and there was very little room between our seats and those in front of us. Emmet spent the first two periods on my lap. If you’ve never had a 60-pound dog sit and squirm on your lap for 2 hours, I don’t recommend it. But for the first two periods, besides shifting to get comfortable, he seemed to enjoy the experience, watching the players and puck move back and forth on the ice.

    By the third period, though, he was growing more uncomfortable, and the arena was getting louder as the Avalanche pulled away in the score. My wife took him outside for the rest of the game, and he was much happier. So were my bruised legs. Lesson learned.

    The baseball game was a different story. Emmet did great walking through the crowded stadium. We were able to secure accessible seats, which, at a baseball stadium, are generally roped-off sections at the concourse level behind the lower sections. We had folding chairs, shade, and enough space for him to stretch out comfortably and take in the game. The noise level, especially since it was outside, was much more tolerable for him, as well. Before we left, we swung by the team store and let him look at the pet section, where he selected a squeaky plush baseball bat, which he carried to the register himself.

    Other than another extended delay, the return flight was much more manageable. My wife was traveling with us, so we had the entire bulkhead row for Emmet to stretch across and lay down. He settled in much easier, too, as did I, since I knew what to expect. I relaxed and watched a movie, occasionally reaching my hand down to comfort Emmet, and he fought sleep. We were all exhausted, both from the flight and from the activity-packed trip.

    After we landed, we grabbed our bags, found the car, and headed home. We pulled into the driveway and unpacked the car. We left the bags in the kitchen, opening them only to retrieve our toothbrushes. We made it upstairs, washed up, changed into our pajamas, and fell into our beds. Emmet gave one last stretch and jumped into my son’s bed with him, laid his head down, and took a big, deep breath. As much of a fantastic trip as it was, full of amazing and first-time experiences, it was good to be home.

  • The Right Path

    The Right Path

    I spend a lot of time wondering how I am doing as a parent. I often feel like I’m focused on correcting and not always celebrating behavior. Rather than settling into a positive, I stay on guard and wait for the next negative. When I focus on the negative, it often becomes the only thing I see. But every once in a while, my son will do something that gives me enough pause to reflect on where he is and where I am as a parent, and it makes me feel like I’m doing okay.

    For the past few months, my son has been obsessed with AirPods. My wife and I both have a pair, but my son had been using his tired over-the-ear headphones. We eventually got him an inexpensive knock-off set of earbuds to try out. They were red and came in a case that lit up, and he liked them, joining the “What?” crowd that comes from talking to someone who has earbuds in their ears that you can’t see. As much as he liked them, he still had aspirations of getting a set of authentic AirPods.

    A few weeks ago, my wife and son met up with my son’s friend from school and his family at one of those arcades that also has laser tag and go-karts. Another thing the arcade had mixed among the video games was claw machines.

    We love claw machines. There’s a hotel we stay at in the mountains that has a small arcade in the basement, and we’ve spent more time and money on those claw machines than the other games in the arcade. There was a claw machine at the Walmart near my parents’ house in Florida that we would hit regularly. Basically, if we are anywhere with a claw machine, we’ll play it.

    My wife is the Queen of the Claw Machines. I’m pretty sure she is the one that got us hooked. If there was such a thing as a professional claw machine player, my wife could go pro. She also has a natural feel for it. Me, I have to look at the machine from different angles to line up my approach. Sometimes I’ll do the same for my son. I try to get the claw in the correct position, checking from the top and both sides, before giving him the nod. We’ll watch the claw slowly lower and grab our target and hopefully carry it over the prize chute.

    At the arcade with his friend, my son played the role of a spotter. From the side of the machine, he called out instructions while his friend commanded the control stick to navigate the claw over the prize. Once it was lined up, his friend pushed the button to release the claw. They watched as the claw lowered and came to a rest before lifting upward. The moment of truth with a claw machine is on the rise, seeing if the claws can wrap themselves around the prize.

    They did.

    The next test is whether the claws have a firm enough grip to withstand the shaking when they reach the top and then jerkily slide over the chute. Between the shaking and the elevated chute designed to knock the prize out of the claw, even second of that journey is tense and often leads to heartache.

    The boys watched as the prize made it safely through each obstacle and came to a stop over the chute. The claws loosened and released their grib on the small white box. Excitedly, my son’s friend reached his hand into the collection box and pulled out a new set of AirPods.

    The details of what transpired next are fuzzy, but my son’s friend said he would give the AirPods to my son. It was such a sweet gesture, but I’m sure he really wanted them, too. My wife stepped in and said that because it was his friend at the controls, he should be the one to keep them. I’m sure my son was disappointed, but he didn’t pout or argue or throw a fit. After all that time wanting those AirPods, he was just happy for his friend.

    I wasn’t there, but my wife and son relayed the story to me that night. I suspect there was still a tinge of disappointment inside, but my son was still happy for his friend and proud of his role in winning the AirPods. When it was time to get ready for bed, he popped in his red knock-off earbuds and pulled up Spotify. I could hear him singing as he brushed his teeth, the pitch of his voice muffled as the toothbrush changed the shape of his mouth.

    As much as I want him to have everything, it’s these moments of unguided generosity and empathy and friendship that reveal the kind of child that we are raising. I sat with that feeling as long as I could, alongside my wife, who was equally as proud of him as I was.

    We never know how things are going to turn out, the only thing we have is now. And, in that moment, it felt like we were doing okay.

    When we went upstairs, he way lying in his bed. I said something to him that he didn’t hear, and he pulled out one of his earbuds.

    “What?” he asked with a smile.

  • 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.

  • You’ve Got A Friend

    You’ve Got A Friend

    A few weeks ago, we had one of my son’s friends from his new school and his family over for dinner.

    My son goes to a school for unique learners. He started there last year, and we uprooted from the city to move closer to the school. It was a big risk at the time, but it paid off.

    It’s the first time we felt like he was in a place that understood him and was putting in the work to teach him. It’s the first time since our epilepsy journey started that he has been able to attend a full school day. My son is happy, learning, and surrounded by kids who are just like him; each one of those students has unique challenges and reasons for being there.

    My son and his friend often FaceTime after school and play Minecraft. I’ll hear them talking and laughing from the basement, and I’ll exchange greetings with his friend when he hears me checking in. When his friend was out of school for a few days, my son would check in with him to see how he was doing. When his friend came over for dinner, the first thing he said when he got out of the car was that he needed to check on my son to make sure he was okay because my son had a rare daytime seizure the previous day.

    The boys played for hours. They played video games and had Nerf battles in the basement. We heard the same joking and laughing in person that we did when they were chatting on FaceTime. It was a wonderful sound to hear in person.

    While the boys played in the basement, the adults stayed upstairs and talked, mixing time between crafting and food preparation. We had a lot in common. Both families were dealing with a severe medical condition, as well as the complexities that come with it. Both boys struggled in school, and both families struggled to find a place that would work for them. There were doctors’ appointments and extended absences from school that made it hard for them to build and maintain friendships. But both families found a place where we felt the boys could learn and grow and where they found each other and other friends just like them. Both families also have one more year before we go back to the negotiating table in order to continue at the school that has given our kids a chance to be seen and to learn.

    Listening to them share their story also made me furious. Not just because families of children with special needs shouldn’t have to fight so hard or be abused by the system, but also because the way their family was treated was amplified because of their race. The things they were told about their son were shameful and terrible, even more so because the comments came from people who called themselves educators.

    This is the reality for kids who don’t fit into the box. The system, every system, is designed for the majority. It’s more efficient when all the pieces look the same and can be treated the same way. When an “other” shows up, it slows down the machine. The system will try to make the “other” confirm if it can or discard it in order to return to “normal.”

    In some cases, when the “other” proves resistant to being discarded and fights back, the system makes conditions intolerable until the “other” has no choice but to leave. We’ve experienced this ourselves, and we’ve seen it play out too many times with the people around us, especially those on a similar path. It plays out the same way in the bureaucracy of the local school system as it does on the national stage.

    Navigating this world is hard and exhausting. It often feels lonely and isolating. It’s been a while since we talked to someone who understood our experience that deeply. It was cathartic to look across the table and see someone who knew what it was like. As terrible as the experiences have been, it was comforting not to feel alone.

    Playing in the basement, it was also apparent that the boys didn’t feel alone, either.

  • In Broad Daylight

    In Broad Daylight

    Baseball season may be over, and my son and I have started playing catch almost every day in the yard. He had such a good season, and hearing stories of how professional athletes practice every day inspired him to do the same.

    I remember playing catch and baseball with him when he was younger. We started with a padded, big-barreled bat and a stuffed ball. I’d gently toss the ball, and he would mostly pick it up from the ground and try to throw it back. It was a huge milestone when he started to catch the ball.

    As he got older, we moved up to a baseball and glove. He struggled, like most of us, to work on those muscles to squeeze the glove closed when he caught the ball, so sometimes the ball would fall out. But as he got older, stronger, and practiced, those muscles and the softening glove made it easier to keep the ball in the glove.

    Over the years, we introduced ground balls and popups, with the ground balls getting faster and the popups getting higher the older and more skilled he got.

    I have these thoughts as I watch him now, catching balls on the backhand and making solid throws into my glove. I can throw it harder to him, and he can throw it harder back, creating a solid smacking sound as the ball hits the glove. If I don’t catch it just right, sometimes I’ll feel a sting in the palm of my hand or on my thumb if the ball doesn’t catch the netting correctly. I’ll exaggerate a grimace, and my son will feel like he threw the ball as hard as a major league player.

    It’s to the point now where we will take turns catching the ball, flipping it into the air with our glove, catching it casually in our throwing hand, and returning the ball in a series of smooth motions. Sometimes he’ll add a spin or flip the ball up between his legs and catch it. Such showmanship!

    It’s been so amazing to come home after work and for him to ask me if I want to go outside and play catch. “Of course,” I’ll say. Spending one-on-one time with him every day is important, and playing catch with your son is something most dads aspire to, and we’re doing it. No matter how tired I am, even if we only play catch for 15 minutes, it’s worth it. And I know he enjoys it, too. Even after a long day at school, he’ll come home tired and rest for a bit, but then ask me to play catch when I get home.

    The other day, we went out to play catch. After a bit of warming up, we started walking farther apart to increase the distance. As we did, we began to both add flair to our catches before returning the ball.

    My son threw the ball a little low, so I bent down to catch it in my glove. I stood to return the ball and, at first, thought he was doing some kind of dance while waiting for the ball. A few seconds later, I dashed across the yard. It wasn’t a dance. It was a seizure.

    My son hasn’t had a daytime seizure in a long time. Most of his seizures are in the early morning while he is sleeping. Occasionally, if he’s exhausted, he might have one going to sleep at night or during a nap. But we haven’t had a daytime seizure like this in years. It reminded me of the seizures he would have when this all started while he was playing tee-ball.

    The seizure wasn’t very long, but I got to him before it ended. He was still standing, his hands stiff in front of him and his body jerking in rhythmic motions. Once that stopped, I helped him sit on the ground.

    He was postictal, his lips smacking as he started to come around. I rubbed his back as we sat on the grass, telling him that I loved him and that he was going to be ok.

    “Did I have a seizure?” he asked.

    “Yes, pal,” I replied.

    It struck me as I sat there with him that I hadn’t seen a seizure like that in person in a long time. Usually, I see them through the camera in his room. There is a sense of routine to those. I wake up and watch the monitor to see if I need to go to him, but most of the time, he rolls over and simply falls back to sleep.

    But this one was right in front of me, in broad daylight. It reminded me of the seizures he would have playing tee-ball. The seizures would attack in broad daylight, in front of everyone, as my son tried to play. It was hard not to be brought back to that time as the feelings of fear and desperation that I felt back then tried to resurface. I did my best to push them away and comfort my son, hoping this was an anomaly rather than a sign of things to come.

    Once he recovered, I brought him inside to cool off and rest. My wife came down, and we sat on the couch and watched a movie as a family. I watched my son as we settled in. I don’t think he remembered what it was like to have a seizure, either, and I could see him work through his feelings. Eventually, he leaned into my wife and focused on the movie, little laughs coming as the characters did something funny. I started to let my guard down, too, and settled next to him.

    Eight years in, seeing a seizure doesn’t get any easier. But the way we respond, with compassion and love, helps connect us and push away the fear and the darkness.