epilepsy dad

Tag: future

  • 10 Years

    10 Years

    We’re coming up on the 10th anniversary of our son’s first seizure.

    When he was nine years old, we marked the milestone of half of his life being with seizures and half of his life being without seizures. Now, he has lived more than 2/3 of his life so far with seizures. We barely remember a time before.

    When his seizures first started, there were times when we didn’t think we would see another day, never mind another year. The first few years were filled with countless emergency room visits, long hospital stays, extensive therapies, medications, related side effects, special diets, and surgery. Our son was broken down into his basic parts but stayed intact through the love and support of the people around us.

    The next few years were about staying afloat, with a pandemic mixed in because things weren’t hard enough. The seizures never went away. We struggled to find him a school, a community, and friends as he drifted further from his peers in academics and social interactions.

    These past few years, we have gone from staying afloat to building. We moved to the suburbs where we have more space. We found him a school that has accepted him and helped him learn and grow academically and socially. He graduated 8th grade. He has friends. While we don’t know what it will look like, he has a future. For so many years, that was just another “f-word.”

    10 years. 10 years of little sleep, lots of worry and struggle, but also lots of love. 10 years of personal growth to become a better father and husband. 10 years to feel like we might see 10 more years after we weren’t even sure we would get even 1.

    Regardless of what the past 10 years have looked like, I am grateful for each and every one of them.

  • Avoiding Reality

    Avoiding Reality

    A while ago, I went with my parents to an appointment with an estate planning attorney. We’ve been pushing them to get a new will and legal documents since they moved to Pennsylvania, but it never seemed to be a priority.

    Over the last year, though, both of my parents have continued to struggle with health issues and it has only gotten worse. While their nest egg wasn’t substantial, they had specific wishes for what to do with their estate and it wasn’t enough to just tell me what they were.

    As I sat in the lawyer’s office and listened to his questions, I thought about our plan. Or rather, our lack of a plan. The extent of our planning is adding beneficiaries to our accounts, which is a) not a plan and b) not enough. If either my wife or I pass away, the other can manage to keep things going. However, the elephant in the room is what happens when both of us are gone and, more importantly, what happens if that happens when my son is young or if he’s not able to be on his own.

    A few years ago, I started to write a post by jotting down what was in my head:

    • I know he is going to get older.
    • I don’t want him to.
    • I want him to stay this age.
    • I want him to be able to stay with us.
    • I want to be able to take care of him.
    • I don’t want him to have to face the world.
    • I don’t want him to have to take care of himself.
    • I don’t want him to have that burden.
    • I don’t want him to fail at it and to have a hard life.
    • I have to set him up to do it himself.
    • I have to put in a safety net.
    • But I’m not going to be here forever.
    • I’d fail him if I pretended he wouldn’t get older, or didn’t do anything because I didn’t think he would get older or because I don’t want him to get older.

    There is a lot to unpack there, but the thoughts and questions I had years ago are still relevant today. Each year, I’ve thought “this is is shaping up to be the year we get things under control.” However, each year ended with the same questions remaining unanswered.

    Who will take care of him if he is still a minor? At one point, we had a plan there, but it’s been too long and so many years that the family who would have taken him is no longer viable.

    How will he make a living? What if he isn’t able to work or generate an income? What if the only money he will have is what we can leave him? I make a good living, but there are a lot of expenses that come with any medical condition, both normal living and trying to have a good life, medical expenses, educational expenses, and other things that chip away at the nest egg.

    Facing these concerns and answering these questions is the only way we can realistically try to secure the future we want for our son. But being realistic means accepting and facing reality, which is not a trait I am always known for, especially when it comes to my son’s future. There is always a reason to put it off. There is always “one more thing” we want to do to get everything in order before we talk to someone. The result is another year without a plan, which is such a disservice to him.

    It’s time to do different.

  • 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
  • The Long Plateau

    The Long Plateau

    We are standing on a plateau.

    For the past few years, my son’s condition has remained the same. He still seizes almost every day. He’s still on a handful of medication multiple times a day and the ketogenic diet. He still struggles in school and navigating relationships with his peers.

    I should be grateful that he hasn’t gotten worse.

    The beginning of our journey with epilepsy was the equivalent to falling off a cliff. We went from a normal childhood to fighting for his life in the matter of months. We went from school and friends to hospitals and doctors and nurses and therapists. We went from playing hockey to being toxic on medication and needing to be carried to the bathroom. Back then, I would have longed for things to stay the same.

    Once he was stabilized, we spent the next few years trying to rebuild what he’d lost. Progress was agonizingly slow, especially as we discovered more pieces of him that could not be rebuilt. We stumbled every time we pretended that things were ever going to be like they were before. While we were no longer falling, the slope of ascent was so gradual that it was hard to tell if anything was getting better.

    Eventually, some things did get better. There were fewer seizures, confined mostly to the early morning. He graduated from a handful of therapies. He stepped foot in school again. Some things did get better, but not back to where he was before that first seizure. And not any further.

    Are we really plateauing or does it just feel that way? Are we doing everything we can to keep making progress or, like a person trying to lose weight, are we giving the appearance of doing everything but secretly skipping workouts or sneaking in extra calories? Or have we truly reached our limit of progress?

    Years ago, when the direction of my son’s condition turned around, every day probably felt this way. I wondered whether things were as good as they would get, much like I’m doing now. I wondered if we were doing everything we could and whether we we doing everything right. I looked for someone to blame rather than accepting the reality of the situation. Because it’s impossible to believe that, no matter what you do, things will never be what you though they were going to be.

    The longer things stay the same, the more I forget how far we’ve come. The more that “this is it” feeling takes over. The longer I sit in that feeling, the harder it is to hold on to hope for better.

    And this plateau feels so long.

  • A Sense Of Time

    A Sense Of Time

    I had a birthday recently. Getting older doesn’t generally bother me but, this time, my birthday felt different. This time, my birthday came with the realization that, realistically, I’m past the mid-point of my life. It made me feel like I was running out of time.

    I’m running out of time to spend with my family.

    I want to spend as much time as I can with my family. I want to look back on my life and not think that I worked too much, or was on the computer too much, or was on my phone too much. I want to look back on my life and know that I was a present father and husband. I want to know that I went to all the baseball games and performances and that my wife and I had date nights. I want to know that I was there when my family needed me.

    There are so many obligations. There are so many distractions. There are so many demands on my time. My birthday made me wonder if I was making the right choices with how I spend my time.

    I’m running out of time to prepare my son for the future.

    Epilepsy through such a curveball at my son’s development, both intellectually and socially. It set him back a few years, and the gap is widening between him and his peers.

    I worry that there will not be enough time to prepare my son for the world. I worry about what will happen to him after I am gone. But sometimes, I worry too much about preparing him for the future that I forget to let him be a kid. My birthday made me wonder if there was a way to help him develop and grow while still giving him the childhood he needs and deserves.

    I’m running out of time to prepare the future for my son.

    I also feel such a sense of responsibility to prepare the future for my son. We don’t know what his life will look like after we’re gone. We don’t know if the seizures will ever be under control. We don’t know if he’ll be able to support himself, or hold a job, or have a family.

    I used to think only about having enough money for a comfortable retirement, but now I think about how I can best secure a comfortable future for my son. There is less time to do that now, and focusing on the future takes away from the present and spending time with my family. My birthday made me wonder if I was making the right choices now to protect my son in the future.

    There is still time.

    Although it originally felt like a sense of urgency, what my birthday actually gave me was a sense of time and the importance of it. It made me question my relationship with the future and the present and ask myself if I am spending my time in each way that I should. It made me realize that I often live at the extremes, ignoring either the present or the future, instead of finding the healthy balance between the two.

    I’m not sure what I’ll do with the gift, but I’m hopeful that I will make the most of it. I suppose we’ll have to see what happens.

    In time.

    Enjoy yourself. It’s later than you think. ~Chinese proverb