epilepsy dad

  • Catalysts of Change

    A couple we are friends with were pregnant right before the pandemic began. We were excited for them, and my wife was more excited about the opportunity to hold the baby. Then the pandemic happened, and it would be almost two before we saw their son other than at a distance or through a window.

    As the world has opened up a bit more, we were able to spend some time with them. Their son was already walking and saying words, and it was wonderful to see how happy he was. It was also wonderful to see how our friends had changed and opened up since their son arrived.

    It made me think of how much I had changed, not just when our son was born but also after he was diagnosed with epilepsy and all the challenges that presented.

    There are obvious reasons why having children changes us. They are completely dependent on us for everything, and that requires an instant upgrade of our maturity and level of responsibility. We lose some of our selfishness, and our choices become less about us. We start thinking more about the future. Having children takes us out of ourselves and expands the context in which we live.

    It’s hard to change patterns that have been with you since you were young. I think most people say they want to be better parents than the ones they had but then wind up doing a lot of the same things our parents did, anyway. Having a child may be an opportunity to do differently, but that doesn’t mean we can or do.

    When our son was born, I started on my journey of growth. I thought more about the example I would set for my son and the type of father I wanted to be. But I was a mess, and having him shone a big spotlight on how far I had to go both as a father and as a husband. I second-guessed everything because the weight of the responsibility was unlike anything I had experienced before. That insecurity caused me to go inward and protect myself, which pulled me further away from what I should have been doing for my family.

    Eventually, we found our groove, but it felt more like a plateau than a destination. I did change, but just enough to keep things together and to move forward. We did family things, and I was progressing at work and felt like I had figured some of it out, but life would throw in a twist and let me know that I had barely started.

    The first seizure was a wake-up call, like an alarm clock, but we were able to hit snooze. The second seizure, though, let us know that it was time to get up. The rapid deterioration of my son’s condition meant that I wouldn’t be able to sleep again.

    There were years when it felt like everything was hanging on by a thread, both my son’s health and our family. The challenges we faced were impossibly difficult and not something for which anyone could have been prepared. When things were good, I pretended like they were always good. When things were bad, I disappeared into myself or into work or a dark hole, anywhere to avoid the fear and pain and struggle.

    It took time, patience, therapy, and my son stabilizing before I could get out of that hole. I could have lost everything while I was in there. I almost did. But when I climbed out, my wife and my son were still there.

    In the past few years, I have done more to become the husband, father, and person that I want to be than I have at any other point in my life. Even going back through old posts, I remember those difficult times and can see a record of my progress. I can look around and see how much closer I am to my wife and how intentional and present I try to be with my son.

    But I’m not done. There is more to do. This is a lifelong journey of growth, with the course adjusted at each milestone. Milestones like having a child. Milestones like nearly losing a child. These events are opportunities to grow if we let them. And we should. The stakes are too high to ignore them. And the rewards are too great to ignore.

    Welcome the change.

  • 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.

  • Modified Atkins Diet for Epilepsy

    Modified Atkins Diet for Epilepsy

    Last summer, I wrote about how my son was switching to the Modified Atkins diet after nearly seven years on the Ketogenic Diet. Since it has been a year on the new diet, I wanted to share an update on how it is going, as well as a few tips and foods we’ve depended on with the new diet.

    The Ketogenic Diet is a special high-fat, low-carb diet that can help control seizures for some people with epilepsy. We started on the diet soon after my son began having seizures, and after it became clear that we would need more than medications to prevent his seizures.

    Keto was initially a struggle, both in terms of finding foods and ways to introduce fat into my son’s diet and the effort and logistics involved with measuring every ingredient and preparing meals separately from the meals my wife and I ate. We would bring his food with us to restaurants and, when we traveled, extended trips required a place to stay that had a kitchen. But we made it work because the diet, along with medication and a VNS, helped manage my son’s seizures. We have never been seizure-free, but we found the right balance between medication and quality of life, even if my son mostly ate the same handful of meals.

    The Atkins diet is a low-carb diet from the 1970s. Similar to the idea behind keto, the idea is to limit the number of carbs. The Modified Atkins diet blends the low-carb approach with adding more fat. For my son, it opened up a new world of food, especially since the popularity of Atkins and other low-carb diets have introduced a number of products on the market that are easily available on the shelves of most grocery stores.

    My son now gets a set number of net carbs a day and a minimum amount of fat that he should have, although we’re always trying to add more fat into each meal. He can have as much protein as he wants, which he demonstrates by piling up the hamburgers and hot dogs onto his plate (he’s less excited when chicken and fish are on the menu). Net carbs are calculated as total carbs minus fiber, so fiberous vegetables in a salad are a mainstay, as well, and my son hasn’t seen this amount or variety of vegetables since before keto.

    When we transitioned from keto to Modified Atkins, we monitored my son closely to see if there were any changes to his seizures as well as any changes to his cognition…there are some reports of keto helping improve cognition. In both cases, we haven’t seen any meaningful changes so far. His seizure frequency and duration are the same, and we haven’t noticed any worsening in his cognition.

    The most significant change that we’ve seen is his quality of life. My son was so excited to have a sandwich for lunch, just like the other kids in school, rather than the fat-heavy ice cream we usually sent him with. He can also have a small bowl of low-carb cereal for breakfast, just like his friends. And now we eat the same meals at dinner, just in different proportions.

    I was wrestling over the past few years with the Ketogenic Diet as I saw my son notice how his food differed from his friends. I started questioning the value of the diet and pushing to get him off it while the doctors were convinced that it was helping him. The Modified Atkins diet feels like a step in the right direction. Even though it is still a medical diet, there are enough options that it doesn’t feel as much like a restrictive diet as keto did.

    Overall, the change has been a positive experience for my son and our family. While it may not be an option for everyone, it is worth having a conversation with your doctor if you’re looking for alternatives to the ketogenic diet to help manage seizures.

    —

    If you’re on or thinking about the Modified Atkins diet, first check with your doctor. But I wanted to pass along a few items that are staples for us that have made the diet more manageable and delicious.

    Catalina Crunch Cereal – There are a few low-car cereals (5g net carbs per 1/2 cup) on the market, but we’ve found Catalina Crunch to be easily available and tasty. You can find them in the cereal aisle at Whole Foods, or try a sample pack of flavors through Amazon or direct from the manufacturer.

    Schmidt Oldtype 6/47 Bread – At 6g net carbs per slice, this is the bread that allows my son to have a sandwich at lunch. The taste and structure are close to that of other breads and it holds up well. The bread comes in a few varieties, as well. There are other 6/47 options like buns and bagels, but those have more net carbs. The bread is available at our local Acme grocery store.

    Outer Aisle Sandwich Thins – Found in the frozen section of Whole Foods, we toast these in the oven and use these as hamburger buns. Two slices is only 2g of net carbs.

    Outer Aisle Pizza Crust – Also from Outer Aisle and available in the frozen section at Whole foods is their pizza crust. When we were on keto, we made crust out of soy flour, mayonaise and egg. These are bigger (and already made) and only have 3g net carbs per crust.

    Mission Carb Balance Tortilla – These are available in most grocery stores and offer a low-carb option for burritos, quesadillas, and wraps. At only 4g net carbs per tortilla, my son can have two good-sized quesadillas for dinner with cheese and meat or beans snuck inside. Pro-tip: If you slather on some mayo and then add the cheese, it’s a good way to add more fat to the meal, too.

    Atkins Bars – Atkins bars are great to have for a snack. There a meal replacements, snacks, and treats, each with differing amounts of net carbs. But we usually add one of these to my son’s lunch box for school (Snickerdoodle is his favorite). In most stores, Atkins products are near the pharmacy and health section, not in the granola or Kind bar aisle.

    Impastable Noodles – These are the best low carb pasta we’ve found so far. They come in different types, allowing us to mix up different recipes including traditional spaghetti or mac and cheese. I usually cook it a little longer than recommended to get a better texture, but we all eat these now on Spaghetti Sunday.

  • 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.

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About

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