epilepsy dad

  • Trade-offs

    I started this post in 2021 when we were still searching for a new school for our son. We found a new school and moved out of the city since then, but I wanted to share it because the sentiment remains true. There are always trade-offs.

    We make trade-offs every day. Any time there is a limited resource, like time or money, we have to choose how to spend those resources. I could spend my morning writing, or I could get more sleep. I could buy a new car, or I could go on vacation.

    Sometimes, there are factors involved that help us make a choice. If I didn’t get a good night’s sleep last night and I didn’t want to be miserable all day, I might choose to use that block of time to get more sleep. If my car is falling apart and I need it to get to work, I might choose the new car over a vacation.

    Trade-offs may defer some choices. I might need to buy that new car now, but I can save up and take the vacation later. But they could also mean giving up one choice completely.

    Every situation is different. At different times, different things take priority. Maybe you’ve been cooped up too long and decided to take a vacation rather than buy a new television. Perhaps you like to travel a lot, so you live in a smaller apartment or house.

    Wealth and income play a big part in whether or not there is a trade-off, and it changes the scale at which those decisions need to be made. If I had a million dollars in the bank, I could likely get the new car and go on vacation. But if I have nothing in the bank, maybe I can’t choose either.

    And then some situations might feel like trade-offs, but they aren’t. We’re exploring schooling options for my son because his previous schools couldn’t accommodate him. Virtual learning is taking a much bigger toll on him than we anticipated, so we are once again looking at in-person schools. But the ones that can accommodate him and his needs are private schools which cost as much as going to a good college every year.

    On the one hand, we can use some of the money we would put away for him to go to college now to cover some of the costs. But that means he’ll have much less money down the road should he eventually go to college.

    Or it could mean making trade-offs in other areas. One thing we like doing as a family is taking vacations. Last year, we were fortunate enough to go to Maine a few times. When the world was open, we visited friends and family in Colorado.

    I realize how fortunate I am to be talking about deciding between a private school and college or vacation. There are issues of equity and equality that are pervasive around the world that affect the choices we have and our ability to choose. I know there are families out there making much more difficult choices, like deciding between medication and rent or groceries. They are deciding between the quality of the education for their children and their quality of life. No one should have to say things like:

    “Sorry, buddy, we can’t do this thing you really want to do because we have to pay for your school.”

    “We can’t have this nice thing because we have to pay for your medication.”

    When you are a family that has a child with special needs, more things are a must. Medication, including some that insurance doesn’t always cover. There is the cost of insurance itself, and therapy, and special equipment or food, not to mention enough time and support to be able to go to work and to doctor appointments.

    We end up not only dealing with a medical condition that we weren’t prepared for and all the complexity and fear that comes with that, but also juggling these new tradeoffs and limited resources. It’s overwhelming. It’s neverending. It’s easy to feel trapped.

    There is no easy answer. We’re almost eight years into our epilepsy journey and, while we may have normalized aspects of this life, we don’t have it figured out. We can’t. Things keep changing, and we keep making choices based on where we are at that time, and hope we make the right one.

    There are no solutions. There are only trade-offs.

    Thomas Sowell

    —

    While there is no easy answer, there are a few resources that we’ve found along the way that I wanted to share that may help you feel a little less trapped. If you have any resources that you’d like to share, please do so in the comments below.

    Disclaimer: I am not a lawyer or a financial or tax expert. Please consult a professional or the organizations listed if you need advice.

    Child Health Insurance Program (CHIP) – Not available in every state, but can act as secondary insurance. Although it also serves no- and low-income families, some programs provide assistance based on the severity of the medical condition, too. The Pennsylvania program has an additional benefit of reduced admission to museums and other cultural events. https://www.medicaid.gov/chip/state-program-information/index.html

    ABLE – Tax-advantaged savings program for individuals with disabilities. Similar to a 529, but can be used for more than just education. Depending on the state, contributions may be tax deductible. https://www.ablenow.com/

    National Organization for Rare Disorders (NORD) – We had a hard time getting a new medication covered for our son, and NORD had an assistance program that helped us out. https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/#section-1

    Epilepsy Foundation – A lot of resources. Check our your local affiliate who can provide resources and support groups for your area. https://www.epilepsy.com/

  • Pandemic Life Isn’t New

    Pandemic Life Isn’t New

    In March, we’ll have been in a pandemic for two years. In those two years, the way we live our lives has changed. We live in fear of the disease, of death, of the unknown, and each other. We are more isolated. We haven’t seen loved ones in person. We’re losing our connections to our friends and each other. We don’t go out like we used to, and when we do, we’re masked and hyper-aware of the people who aren’t masked. Going out adds to our daily stress rather than relieves it. It’s safer and easier to stay at home.

    It reminds me of when my son was first diagnosed with epilepsy. The world shut down so quickly once people started getting sick and dying from COVID. The same thing happened when we went from one seizure to two seizures and then watched the doctors try to save my son during our months in the neurology ward of the hospital.

    We lived in fear of his condition, of death, of the unknown. We were confined to the hospital and then at home. We were isolated in a new city far from friends and family. The people we had met had to deal with our unreliable commitments and last-minute cancellations when the seizures and side effects of the medication disrupted our days. We lost our connections to those who couldn’t or wouldn’t understand what we were going through. It was safer and easier to stay at home.

    Rather than focusing on the unmasked danger, our attention was on my son’s unrelenting seizures. We were on constant guard because they were everywhere. Instead of relieving stress and watching him participate in activities like other kids his age, it only added to our stress. I remember standing in as the third base coach for one of my son’s baseball games and watching him stiffen and freeze in place or drop as he had a seizure. I remember anticipating the meltdowns he would have when he was on Keppra and how it hung like a cloud over everything we did. I remember the storm and the anger and the fear and the chaos when the meltdown finally came. I still wake up multiple times at night when my son has a seizure or to look at the video monitor to check in. We started living with constant fear and anxiety long before the world heard of COVID.

    In many ways, it feels like the world finally caught up to where we were. People are canceling plans after experiencing symptoms or a positive COVID test the same way we did when my son had a bad “seizure day.” Or when we were just too exhausted to follow through with a commitment. People are making efforts to stay connected to the people who are important to them and creating more space for each other when life gets complicated. That’s the same thing that happened to us as we went through our epilepsy journey, and we found “our people.” Those relationships are being tested again, but I hope we will find those people on the other side of this, too.

    If we somehow manage not to destroy the world and the pandemic eventually ends, my son will still have epilepsy. We will continue to need that space and understanding because, while the world may go back to some form of normal, it will still be different from ours. But maybe this shared experience during the pandemic will create stronger bonds because people got a glimpse of what it is like to have something outside of their control have such a major influence on their lives. Maybe on the other side of this people will have more patience, empathy, and understanding.

    If you look at how we are treating each other, it’s not looking that way right now. But maybe there is still hope.

  • Checkpoint

    Checkpoint

    It’s a new year.

    In video games, after you make progress or achieve an accomplishment, you save your game and create a checkpoint. It’s a snapshot of the way things are at that moment. That way, if anything happens after that point, you can always revert to the checkpoint. Everything before the checkpoint already happened and can’t be undone, but anything that happens after the checkpoint becomes volatile until the next checkpoint is created.

    There were so many changes and developments for our family last year. We started last year by adding my son’s service dog to our family. After almost 20 years with the same company, I decided to leave and take a different job at a new company. After 7 years of struggling with the school system, we found a school that is a better fit for my son. Because of that, after 7 years of living in the city of Philadelphia, we also moved to the suburbs.

    Most of last year was about those changes, and for most of the year, they felt like changes in transition rather than an end state. As we came upon the new year, I wanted to shift that mindset from “in transition” to “this is the way things are.” I wanted to create a checkpoint that solidified those changes in a way that allowed us to look forward and build new things on top of the old and create new experiences from that point in time.

    Of course, the checkpoint includes the both the good and the bad, and last year wasn’t all good. It never is. My son still has epilepsy. We are still very much in the middle of a pandemic. The planet and its people are continuing to degrade. We continue to make choices that hurt each other because we’re too selfish or ignorant or malicious. We still need to be right. We still need to be justified. We still need to win. Or maybe we’re just too hurt ourselves. People are messy.

    That pain is part of this checkpoint, too. Some of it is harder to leave behind and accept as “facts from the past” because it seems determined to infect this year, too, and influence the volatile nature of the present and future. As much as the hope is to leave the hurt and the actions and the trauma in the past, it’s hard to ignore their echoes that exist in the present.

    A checkpoint also means you can’t go back. You move forward. You can do things differently from that point on, but you can’t go back and undo what has already been done. That’s the risk of creating one. But in life, we can’t go back. Wishing we could go back and do it differently or make different choices is focusing in the wrong direction and prevents us from accepting what is and focusing our attention on the only direction we can actually influence.

    Forward is where we have choice. Forward is where there is possibility. Forward is where there is a chance to heal. Forward is where there is intention. Forward is where there is hope.

    It’s not a matter of letting go – you would if you could. Instead of “Let it go,” we should probably say “Let it be”.

    John Kabat-Zinn
  • Trying Something New

    Trying Something New

    Shortly before the year started at my son’s new school, we received an e-mail announcing that they were recruiting for their soccer team. When we mentioned it to our son, he was excited, so we signed him up.

    On the first day of practice, I took my last meetings from the bleachers to check in on my son. Soccer practice was after a full day of school, which was also something new for him, so I wanted to make sure that he wouldn’t push himself past the point of exhaustion.

    The team was a mix of kids who had never played soccer before alongside seasoned veterans who ran circles around the other kids. My son was in the former category. I could tell there was a lot of new information being thrown at him, but he hung in there. When practice was over, I gave him a high five, and we headed home.

    That night, as I was putting my son to bed, we talked more about his day. When the topic of soccer came up, he said he was excited but also very tired, adding, “maybe I’ll skip soccer tomorrow.”

    As we talked more, it was obvious that the full day of school and soccer practice was physical and mentally draining, but there was more to it. Soccer was something new, too, and he wasn’t good at it yet. He was feeling nervous and insecure, especially since one of his friends on the team was much better than my son.

    It’s easy to get excited about something new. Still, sometimes that excitement only carries you up to the point where you have to do the new thing: signing up for a new activity like soccer, moving to a new location, or changing jobs. But when you are standing on the side of the field, about to put in an offer on a new home, or reading a job offer, that’s when the fear and uncertainty creep in.

    What if I’m not good at it? What if someone else is better? What if I get rejected? What if I make the wrong choice? What if the new thing is worse? What if I miss out on something better? What if I don’t deserve this?

    Those voices in our heads that question our choices and our worthiness get louder as we get closer to acting on that excitement. They thrive in uncertainty and fill in the gaps between what we know and what we don’t know yet with stories of fear and doubt. They don’t want us to put ourselves out there. They don’t want us to fail. They want to keep us safe. But they can also keep us from something better.

    I look at my own life and how many times I was afraid to start something new. I think about the experiences I would have missed out on had I not taken the next step.

    I shared with my son stories of when I was afraid or uncertain. I told him how I was nervous when I joined the Army, and the first time I played drop-in hockey in the city, even though I didn’t know anyone. I told him about getting on stage to give a presentation, and how I still get nervous when writing a post for this blog. I told him how I wasn’t sure that I could do any of those things, just like he wasn’t sure about soccer. But, especially when it is something that you want to do, sometimes the hardest thing is taking that next step.

    Not everything went the way I thought it would or wanted it to, but I can look back and be proud that I took that next step. I can be grateful for the experiences that I’ve had. And I can use those experiences as a catalyst the next time I face uncertainty, insecurity, and doubt.

    “Let’s see how you feel in the morning,” I said. “We shouldn’t make any decisions when we’re this tired.”

    “OK, daddy,” he replied and turned to the side and closed his eyes.

    The following day, he came down for breakfast, already dressed and ready for school.

    “Good morning, daddy,” he said, pointing at his socks. “These are soccer socks because they are long like soccer players wear.”

    “I see that,” I said. “How are you feeling about playing today?”

    “I’m excited,” he replied. “I think I was just tired last night and a little nervous, but I’m ready to get on the field!”

    He sailed through the next few practices and now spends time between practice kicking the ball in the yard. He also learned that one of his friends in the neighborhood was on a soccer team and picked up a few tips from him.

    He got through that initial fear and found a new activity that he enjoys doing. Not every story will have such a happy ending, but he would never have known unless he took that next step.

    I am so proud of my boy.

  • Lucky 13

    Lucky 13

    This week is my wife’s and my 13th wedding anniversary.

    When I think back to how it all began, it seemed improbable that we would have ever met. I was a software engineer working in a Colorado suburb, and she was an actress and musician running a musical theater school in the foothills. We traveled in different worlds that had little overlap. But we both had friends that encouraged us to try online dating, and my favorite algorithm of all time is the one that decided that we were a match.

    We started slowly. We spent months getting to know each other over e-mail and texts. The first time we talked on the phone, I was visiting my parents and pacing around their pool like a nervous teenager. When I returned from my trip, we finally had our first date and our first kiss.

    As our relationship continued, I started to see more of her world. On one date early on, I sat at a table, nursing a drink, watching her sing on stage. I still smile when I think about it. I was already in love with her, and there was something transcendent about watching someone you love doing something they love.

    At the time, I was learning about photography, so I became the official photographer for her school and began to take photographs of the performances. I would see her share her gift with the children and watch as they put on these incredible, professional performances. What she was able to draw out of these kids and the way she did it was inspirational.

    The more time I spent in her world, the more amazed I became. She brought things out of me, too, that I didn’t know anyone could. It was challenging at times, and I didn’t always handle it well, especially when what was coming out collided with my baggage and fears. But I was growing, and we were growing together, and I knew that I wanted to spend the rest of my life with her. Our wedding day was a wonderful, blurry blending of our two lives.

    Almost a year after we were married, our son arrived. We didn’t have much time to explore life as a married couple, and the change and the challenges of being new parents strained our relationship. My wife had to take a break from teaching, and I only had a few weeks off before I had to return to work. There were hard days, but we were so grateful for his presence, and we did our best to figure it out.

    Eventually, we found help from an amazing nanny and my wife could return to work. She found her groove with the school and managed to juggle being a business owner and being a mother, and one of my favorite pictures from that time was when our son played the baker’s son in Into the Woods.

    I was slowly advancing in my career, as well. When my company offered me a position that required moving to Philadelphia, my wife didn’t hesitate. It’s only in hindsight that I can even begin to appreciate how much she gave up to support me in that move. But it was only the start of the things that she would give up.

    On their first trip to Philadelphia, my son had his first seizure. It was not the introduction we hoped for to the city that would become our new home. But it was one seizure, and it didn’t stop our move east.

    The second seizure came as my wife and son boarded an airplane a few months after our move. She managed to get him off the plane and rode with him in the ambulance to the children’s hospital. By the time I met them at the hospital, my son was stable, but my wife was understandably shaken.

    In the months that followed, my son’s condition only got worse, and my wife was the one who was with him every day. I would go to work, and she would be alone with him in the house in a city where we didn’t have any family or support outside of what we received at the hospital. When my son’s condition got so bad that he needed to be admitted, and when we discovered what “Keppra Rage” was, and when we thought we were going to lose him, she was the one that bared most of the burden, and she is the one that essentially pulled us through.

    Over the next few years, my wife would start teaching music or singing with kids of families we met through school, but it was hard to keep the momentum going. Even as my son was becoming more stable, he still couldn’t do full days at school. Some days we’d get a call from the school nurse, and my wife would need to go pick our son up. Some days he would seize so much that we couldn’t send him to school at all, and my wife would stay home with him. The unpredictable nature of our son’s condition made it impossible to have a fixed routine or plan too far out into the future. She was constantly forced to rearrange her schedule or cancel her lessons last minute. It became too hard to manage so she would stop doing those things so that she could focus on our son.

    Often after the stress and frustration had gone beyond the breaking point, we would try to bring in someone to help at home. But the erratic nature of our son’s condition and the impact on his day made it hard to schedule help, too. We paid a nanny to be on standby in case we needed to pick my son up early because there was no one else we could call. But that wasn’t sustainable financially, so, again, it fell to my wife to give up the things she wanted to do.

    When the pandemic hit, it initially felt like a relief. We were home together and I should be able to help more. But it didn’t start well. Even if I wasn’t going to an office, I would still disengage and disappear behind meetings during the day. My wife was still the one that carried the responsibility of taking care of our son.

    When the new school year started, we tried a dedicated virtual school. Even the haphazard attempt at going virtual by my son’s brick-and-mortar school helped with his anxiety, so we thought it might be a better fit. My wife was supposed to serve as the “learning coach” who would monitor progress and step in if our son got stuck. But it turned into another full time teaching job. My son struggled with the structure and pace of virtual learning. He had a hard time keeping his focus and attention and wouldn’t know what he was supposed to be doing. My wife spent every minute keeping him on task, or helping him do the work, or trying to teach him whatever he didn’t pick up from the teacher. She was in the room with him all day, watching him struggle and watching him fall further behind.

    Over the years, it was always my wife’s instincts that triggered the alarm and forced action. She’s the one who recognized his struggle at school and pushed for a 504 and eventually an IEP. She’s the one who got him a one-on-one aide. She’s the one who got him back into occupational or speech therapy when there were signs of regression. She’s the one who knew that the virtual school wasn’t working and started looking for a school more suited to our son’s needs.

    Around the same time, she also recognized that it was time to move out of the city. We got lucky and found both a school and a house in a nearby suburb. When the neuropsychologist said that the best thing we could do for my son after we received the results of his latest test was “find him a school” and “find a way for him to be around other kids,” we had already done both of them thanks to my wife.

    As we are settling into our new life, I’m seeing my wife start to come alive again. She’s starting to do the things that she was meant to do. She’s teaching a few students in the city and talking about starting a class. She’s working on a book. She’s putting herself out there in those ways that inspired me to do the same all those years ago. It inspires me even more today.

    I am so grateful to be on this journey with her. There is no way for me to balance the scales, but I can keep working at being the best husband and father I can be. I can keep looking for ways to lighten her burden and to support her as she has more capacity to find herself again.

    After so many years of putting others first and being forced to give up so much of herself and what she needed, maybe this is going to be her year.

    Lucky 13.

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About

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