epilepsy dad

  • Family Matters

    Family Matters

    When my son first started having seizures, we had just moved to Philadelphia. We were in a new city with no family and no support system in place. We navigated the fear of losing our son by ourselves.

    My parents were elderly living in Florida. There wasn’t much they could do. My wife’s mother was running a business in Colorado. We told our parents that there was nothing they could do partially because we didn’t know what anyone could do, and partly to free them from the burden of responsibility.

    Along the way, we were supported by our children’s hospital, and the doctors, nurses, therapists, and other caregivers. We hired nannies to help with caring for our son at home. But these were either health care professionals or people we had to seek out and pay for. That made our support system transactional and expensive, and left us still feeling isolated and alone.

    A few years ago, my parents moved to Pennsylvania. It was nice to have them closer, and we were able to occasionally leave our son with them for a night so that we could go on late date nights or spend a night away. My father doesn’t drive anymore, but my mother could also pick up our son from school if we got stuck. And while we desperately needed help when my son’s health was at its worst, it was still nice to have the help now.

    Around the time when my parents moved, we also reconnected with my family in Connecticut. During the pandemic when we made our excursions to Maine, we would stop to visit them. My cousin started coming down occasionally, too, to spend time my with parents. When my parents moved into the assisted living facility, our cousin would stay with us and it was awesome.

    This spring, my mother had a stroke. I learned about it when I grabbed my phone lying in bed next to my son after he had the biggest seizure he has had in years. It was a rescue medication type of seizure, followed by messages from the nursing facility and my father about my mother.

    My wife and I switched into caretaker mode and made a plan. She would stay with my son and I would attend to my mother and check in on my father. I quickly got dressed and headed to the hospital.

    When I got to the hospital, my mother was in poor condition, but she was stable in the intensive care unit. Once I got the report from the nurse, I texted the family. That was mid-morning, and by early afternoon, my cousin and an uncle had made plans to come to Pennsylvania.

    For as familiar as navigating a hospital in response to a crisis was, it was a different experience knowing that help and support was coming. That feeling of having someone show up for you is one that I’m only used to with my wife, who constantly has my back. Having family here meant that we could also focus on my son without worrying about my mother, and also mix in time with my father and time to rest, which we are not typically able to do when these crises occur.

    What could have put an overwhelming amount of stress on my wife and I turned out to be manageable thanks to the support of our family.

    I’m happy to report that my mother continued to recover and went home the following weekend, and my son took a few days off but was able to go back to school and even play baseball that weekend.

  • Transfer Learning

    Transfer Learning

    The sound of a seizure woke us. Normally, they only last a few seconds in the morning, but this was louder, longer, and more intense. We rushed into our son’s bedroom and saw his body rigid, his head turned, and saw the rhythmic pulses of the seizure gripping him. We held him and cleared the drool from his mouth. I grabbed the magnet for his VNS, handed it to my wife, and ran to get the rescue meds. Swiping the magnet did nothing, nor did the first dose of rescue medication. I wasn’t sure if it was because we did it wrong since this was the first time we used the nasal delivery, but we grabbed a second dose and gave it to him. A few minutes later, his body started to relax.

    I grabbed my phone so we could lay in bed with him and saw that I had a number of calls overnight. I listened to the voicemails, and they were from the assisted living facility my parents live in. My mother had a fall and was rushed to the hospital.

    I called my father, who didn’t have many more details. His memory is fading, but he knew that she had fallen and the staff had called for an ambulance.

    I called the hospital to get the details. Eventually, a nurse returned my call and said that my mother had a stroke and was recovering in the ICU.

    I checked my watch. It was only 8 AM.

    Good morning to you, too.

    My wife took care of our son so that I could go to my mother. When I got to the hospital, my body went on autopilot. This wasn’t the first time I had to rush to the hospital after receiving a call. It was a regular occurrence in the early years of my son’s epilepsy. My wife would call and let me know they were on their way to the emergency room, and I would stop what I was doing and head to the hospital to meet them.

    Walk in the door. Hand the check-in desk my driver’s license and get my visitor pass. Get the room number and directions. Hallways. Elevators. More hallways. Nurse’s station. Room.

    There is a technique in artificial intelligence called “transfer learning,” where an algorithm trained to do one task is repurposed for another related task. My hospital process trained for the children’s hospital worked perfectly. The only difference this time was that the patients I passed were adults, but the routine transferred perfectly to this new environment.

    When I saw my mother, it was very similar to the postictal state my son would be in after an intense seizure. The disconnect between the brain and the body as everything came back online caused a loss of understanding, a loss of language, and involuntary motor movements. The same patience we used with our son helped me understand that when my mother said, “I am cold,” it meant, “I want to be cold,” because she was covered in blankets.

    Throughout the day, she continued to improve, and by that evening, she was able to communicate more easily. When I returned the next morning, she was out of bed and sitting in a chair, and her language skills were much improved. Like my son, after he had a seizure, she didn’t remember many details or that I was there the entire day.

    I have a lot of practice sitting at a bedside in a hospital. I have a lot of experience watching a loved one in a scary situation. While I am grateful that the experience helps me stay present and responsible, I would much rather have experience doing almost anything else.

  • 3,128

    3,128

    We are almost as much a Lego family as a Marvel family, so when Lego releases a new Marvel set, it quickly finds its way into our house.

    A 3,128-piece Lego Captain America Shield had been sitting in a box in the basement for a few weeks. One day, my son casually mentioned that he was working on it, and then, a few days later, he said he had finished. He brought us down to look at it, and it was amazing. He was so proud of himself for accomplishing such a marvelous (ha!) feat.

    The next morning, I went to the basement to grab trash from work we had done. There were long metal rails supporting the old ceiling tiles that we took down, which I had bundled. I picked them up, and as I turned towards the door, I heard a crash behind me.

    I turned and saw the Captain America shield that my son had spent days making and had completed just the day before knocked over, with pieces strewn across the floor.

    My heart sank. I was devastated, thinking how devasted my son would be when he saw what happened.

    I was going to head to work after taking out the trash, but I knew I couldn’t leave before attempting to put the set back together.

    I collected the pieces and found the instructions, which were in a book that was about half an inch thick. I flipped open the pages, and it was at that moment that I realized I might be in trouble. The set was extremely complicated. I’m a pretty good engineer and skilled at figuring things out, but it took me some time to understand the construction. Square bricks making a round shape is not an intuitive concept.

    It took me more than an hour to repair what I had done. Fortunately, the broken-off segments stayed intact, and the individual pieces were easy to identify and replace. But, in scanning the instructions, I had that feeling that I sometimes get when, for as much as my son struggles, he does something like this, and it blows my mind.

    When I told my son what happened, I made a big deal about how impressed I was that he did the set all by himself. I told him how overwhelmed I was when I opened the instructions and tried to understand how the pieces fit together. Then I reminded myself of what he does when he believes he can do anything. Once I adopted that mindset, I was able to fix the shield.

    He was proud of himself, not only for accomplishing the daunting task but also for inspiring me to believe that I could do anything. He doesn’t realize that he teaches me that every day by demonstrating it time and again.

  • Making the Invisisible Visible

    Making the Invisisible Visible

    One of the challenges of navigating the world as a special needs parent is finding the time to manage caregiving responsibilities while still maintaining a sense of self. In our family, no one knows this more than my wife.

    Before we moved to Pennsylvania, my wife ran a successful musical theater school in Colorado. When the opportunity came up to relocate for my job, she was ready to start something somewhere new, so we jumped at the chance. Within six months of moving, however, our son was admitted to the hospital in status where he would spend the next few months.

    Even after he was out of the hospital, there were continuing health and behavioral issues, as well as endless appointments. My wife became the primary caregiver so I could go to work, which meant she struggled to find time for herself and had no time to pursue her next opportunity.

    Occasionally, my wife would try to start a small music class, but the unpredictability of our son’s condition made it impossible to maintain a routine. Classes became random private lessons, but it wasn’t what we hoped for her when we made the move.

    Months became years. As the number of appointments declined, her focus shifted to fighting for the services he needed at school and finding other ways to help him reacclimate to the world. There weren’t fewer things to do as his medical condition stabilized; there were just different things to do.

    Epilepsy is sometimes called an “invisible disability” because it doesn’t present external characteristics. Unless you spent time with our son, you wouldn’t know how his condition impacts his thinking, memory, or activities.

    The same label extends to my wife and to many caregivers of children like our son. You wouldn’t know by looking at her what she gave up or the emotional and physical challenges she has had to endure caring for our son. She literally kept him alive, fought for his services, found the right doctors, and spoke up when she knew something wasn’t right. She gave of herself to give him the life he had when there were times we weren’t sure he would have a life at all.

    I continue to be in awe of her. In addition to what she did for our son, she fights through her own health and emotional issues. In spite of that, she published a children’s book last year (it’s amazing, you should get a copy!) and joined a band (they’re amazing, you should see a show!).

    I wanted to time this post for Mother’s Day to make the invisible visible and thank my wife for everything she has done for our son and family. I am also incredibly grateful not only for what she did for our son but for what she has done to help me be a better father, husband, and human.

  • Be Curious

    Be Curious

    Curiosity is one of my favorite character traits. I had a boss who would assign traits to different people to focus on when we interviewed candidates, and I always took curiosity.

    One reason is that, for a role like mine, curiosity is an often overlooked characteristic that directly impacts whether someone will be successful or not. The other is that I am a curious person myself. One of my social media taglines is “endlessly curious,” which is why I am also taking a drawing class and French lessons.

    I would ask questions in my interviews to elicit a person’s curiosity. What was the last thing you wanted to learn about? Why did you want to learn about it? What did you do to learn about it? What did you find out? Why was that the topic you shared? The best answer I received was from a candidate who had less experience than other candidates but was so passionately curious about the subject matter and asking the best questions that we ended up running over our time. He got the job.

    It’s easier to be curious about a topic than about a person. Even a complicated topic is easier to understand than a complex person. It takes curiosity on our part and an openness to share on the other’s part. It takes willingness on both sides to be vulnerable, which can be terrifying. But the reward for being vulnerable and for being curious is a deeper understanding. It’s the difference between dismissing someone at first glance and building a connection. It’s the difference between being invisible and being seen.

    There’s a great scene about being curious and the perils of not being curious from Ted Lasso where Ted plays darts with Rupert, the narcissistic ex-husband of Rebecca, his boss, friend, and the team’s manager.

    Asking questions and being curious is the key to understanding our world. And it’s the key to us understanding each other. We don’t know what other people have going on in their lives, but we make judgments anyway.

    I think about how this applies to my son and how people judge him without asking questions, without being curious about him, without knowing about him, without understanding who he is and what he endures every day to be a part of the world. They see someone who is different. An outsider. Without being curious, they will underestimate him. They won’t see his kindness, his bravery, or his heart. And that’s their loss. But it’s a good reminder for all of us.

    Be curious, not judgemental.

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About

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