epilepsy dad

Author: Dave

  • Out of Balance

    Out of Balance

    One night before bed, my wife came and sat next to me.

    “I know you’re tired,” she said. “But when you get that tired, the way you check out is to be really short with us, and like we are bothering you. We haven’t been spending a lot of time with our son, and that’s how he sees you at night.”

    Of course, she was right. Looking back, I can see how I responded with one-word answers or a tone of disinterest. Our nights became about checking out by sitting on the couch watching TV while our son played video games online with his friends in the basement. Dinner time was mostly apart, as well, us watching TV while he ate and watched his iPad.

    It was too easy to fall into this routine. The long winter nights, the lingering pandemic, the burnout from keeping everything together leeched our energy and motivation. We checked out long before it was time to check out, and anything that required exerting effort or interest was met with resentment and disdain.

    After my wife called me out, I felt ashamed and guilty. I used the excuse of letting him play with his friends to justify my behavior. “He’s doing what he wants to be doing, so it’s ok to check out.” But it was just that…an excuse.

    I’m glad that he has friends now from school and has more independence to hang out with them virtually. It’s what he wants to do and what he should be doing, especially after many years of isolation.

    It also comes after so many years where we were always “on,” too. We were the caregivers of a child with epilepsy, with all the care and worry that required. We were his emotional regulators when he couldn’t do it himself. We were his teachers and his entertainment when he was too sick to attend school. That was in addition to trying to manage our own lives, jobs, and relationships.

    But moving from one extreme to another threw everything out of balance. That’s not to say that the amount of time needs to be equally portioned. My son is getting older, and we’re not his only source of entertainment or care anymore. He should be spending more time with friends and more time with himself. But that doesn’t mean those two things should be the only things in his life or that they are excuses not to be a parent.

    Or a husband. Sitting on the couch next to my wife isn’t spending time together. We’re relaxing but not interacting. We just happen to be occupying the same space and doing the same thing.

    As in most situations, awareness is the first step to change. I’m grateful to my wife for pointing out where I was and how I was responding to our son. Since then, I’ve been more aware of my tone, and we’ve also started having more family dinners, more walks in the neighborhood, and more ping pong tournaments in the basement. My son still plays with his friends, and my wife and I still veg out on the couch watching television. But, now, those aren’t the only things we do.

  • 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.