epilepsy dad

Tag: new year

  • Better Than It Started

    Better Than It Started

    The new year is knocking on the door, which means it’s time to reflect on the previous year and look ahead to the next.

    It’s interesting to look back at the last 12 months at once. While we were in it, living each of the 366 days this leap year, we were busy transitioning from one moment to the next, moving from calm to crisis to celebration. Each moment seemed fleeting because as soon as it happened, we were forced to let go of it and be present in the next one.

    When we pause to reflect and look back, those little moments disappear, and we see only the big ones—the milestones that shaped and defined the year. We extract them as the major plot points necessary to understand how the story of our lives developed.

    This year, our story is one of addition. We added two more countries to our travel map. We added a family member as our goddaughter came to live with us, giving my wife and I a pseudo-daughter and my son a pseudo-sibling. The family expansion has opened him up in remarkable ways. Speaking of opening him up, my son added a new device to his collection, having surgery to implant a DBS in the fall.

    Our story is also one of resurgence as we started to dig out of our post-pandemic hole. We’re having more family meals together, and although we’re addicted to watching Holey Moley now at dinner, at least we’re doing it together. After too many years away from it, my wife joined a band this year and has been singing regularly. And after a spotty past few years, I’ve been posting regularly on the blog.

    I’ve also focused on my other creative pursuits. I took up drawing and have a project in mind for next year. I’ve also continued my French lessons and maintained a 5+ month streak in Duolingo. My son also picked up the language bug and also has an impressive Duolingo streak in Spanish.

    This year, I also worked on myself. Since the spring, I’ve worked out nearly every day, including a few hours of tennis per week and walking the dogs almost daily. I also have a healthier diet. As a result, I’ve lost most of my pandemic weight, which was caused by little exercise and little self-control in food choices.

    I’ve continued with my inner self, as well. With several significant personal and professional challenges this year, I’ve gained clarity on who I am, what I want, and what I can let go of, which has me feeling better than I did earlier in the year.

    Of course, better is subjective. On the inside, clarity in relationships can be better, even if, from the outside, it looks like the parties have moved further apart. It can remove ambiguity, simplify expectations, and provide clear boundaries and expectations, and that is better.

    Overall, we’re ending the year better than it started. I think I will sit in this reflection and re-read this chapter of our lives one more time to take it all in. With so many personal, professional, and political variables that will change next year, it’s impossible to predict exactly how the story will unfold. But if this year has taught me anything, it’s that growth comes from embracing the unexpected and finding meaning in the journey. As the new year approaches, I’m carrying forward the lessons, the love, and the momentum we’ve built.

    Here’s to another chapter filled with challenges to tackle, milestones to celebrate, and memories to cherish.

  • 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 Year That Was 2020

    The Year That Was 2020

    Let me start with the understatement of this brand new year:

    2020 didn’t go according to plan.

    The pandemic changed our lives…our world. So many people have lost their lives. I have friends who lost loved ones to the virus. I know people who have lost their jobs. We were forced into isolation and lived without physical connections. We lived in fear of the virus and of each other.

    The deaths of too many of our Black brothers and sisters shone a light on the pervasive racism that continues to exist in our country. We watched our city express its frustration and desperation for change on the streets, as did many others across the nation and around the world.

    The election continues to demonstrate the divided nature of our country. The same tools that we used to connect with each other when we couldn’t be together also spread dangerous conspiracies that endangered lives and pulled us apart.

    The pandemic didn’t create these things. We were already disconnecting from each other every time we checked our phones while spending time with others or in the middle of a conversation. Racisms and its damaging effects have existed forever. And our divisiveness goes back to the start of our country.

    2020 wasn’t a dumpster fire because it created new problems. Instead, it is because it stoked many separate, smoldering problems. The embers from those fires were carried far and wide, where they were able to gather enough fuel to grow and the individual fires started to connect into a massive blaze.

    The fire has done so much damage. This is usually the part of a post where I would write how fires in a forest clear the way for change. I would mention how the nutrients from the dead trees are returned to the soil and how those nutrients and exposure to sunlight encourage new growth. But I’m having a hard time believing it myself.

    Because of the effects of my son’s epilepsy, I’ve spent a lot of time over the last few years standing among the ashes. When you’re standing among the ashes, it’s hard to see anything other than the damage that the fire has caused. It’s hard to believe that things are going to be any different when it takes so long for those seeds to sprout and become a new forest.

    The turning of a calendar isn’t going to make racism go away. It’s not, nor is a new president, going to bring our country together. It’s not going to return our lives to what they were before, even if we wanted to pretend that these problems didn’t exist before the pandemic.

    Change doesn’t come just from the flipping of a calendar or the passing of time. Change comes from wanting things to be different. Change comes from believing that things can be different. Change comes from action.

    We have to clear away the ash and encourage those seeds to grow.

  • Some Other Beginning’s End

    Some Other Beginning’s End

    It’s already February.

    It feels like we skipped January, which I wouldn’t have minded.

    January sets the tone for the year. We treat it as a fresh start. We make resolutions to change things about ourselves that we want to improve. And then we endeavor to build up enough momentum to carry those changes through the year and through our lives.

    If we’re still exercising in February, or eating better, or not drinking, then there is a better chance that we’ll be doing the same in March and in December. But, inevitably, by the second month of the year, the gym is starting to thin out. There is a pint or two of ice cream in the freezer and a box of wine on the counter.

    I was hoping for a better January. My son had VNS surgery in December. While I knew it would take months or a year to see if it would work, January felt so much worse. We often counted the time between seizures in hours, not days. We were reminded every five minutes when the VNS went off and tickled my son’s throat and changed his voice that we were still at war with a relentless enemy that takes and takes from him, leaving him tired and insecure and behind.

    January didn’t even give us that first, hopeful week. It strapped us to the couch, shoved a ladle full of ice cream into our mouth and poured the box of wine down our throat on the first day. “Just so you don’t get any ideas that this year is going to be different or better, ” January said, smoking a cigarette with its foot on my chest.

    Seneca said, “every new beginning comes from some other beginning’s end.” I’m trying to find a new beginning in all of this. But to do that, I need to find an end, but there never seems to be one. We turn the page of the month, but it’s the same calendar with the same theme that has been hanging on the wall for the last five years.

    The days of the month are color-coded to capture those when my son had a seizure. January is covered with the little yellow squares of activity. February isn’t starting out any better. It’s hard to look at the calendar and imagine that it is ever going to end or that we’re going to get that new beginning we’ve been hoping for.

    But Seneca also said, “Begin at once to live, and count each separate day as a separate life.” Maybe I’m thinking too “big picture”. I’m trying to apply “before” and “after” to months and years instead of to each day. Each day when my son has a seizure ends and a new day begins without one. Each day has the potential to be the day that he doesn’t have a seizure. Each day has the potential to be the one when things begin to get better.

    If it turns out to not be that day, I’ll try to remember that that day will end, too. And when it does, a new one will begin. I’ll try, but it won’t be easy. Because even though I’m trying to be grateful for each day and to see its potential, I’m still longing for the day when things finally get better for my son. Because even if it’s not possible, that’s the new beginning I still really want. But for that to happen, these relentless seizures and side effects need to end.

  • Goodbye, 2018.

    Goodbye, 2018.

    Today is the start of a new year. The Earth has made another full rotation around the sun as we hurtle through space and time. Along the way, moments were left behind like discarded Polaroid photographs that littered the void with what was and will never be again.

    As the universe continues to move forward, it leaves those pictures out of reach. Except they are more than pictures. They are memories with an emotional connection to people and to a time that cannot be experienced again.

    Or changed. If I do try to stretch in to the past, it’s usually to try to hold it and wish I had something different. But that often leaves me feeling sad or empty or guilty.

    There are so many memories that I want to forget. I’m afraid if I reach back to grab one that it will pull me back into the vacuum and suffocate me. Maybe that explains why I’ve never been particularly good at looking back.

    So I try to focus on the present, except that I’m not always great with that, either. I’m better than I was, but I still miss a lot of what is happening in front of me. Maybe things are moving too fast. Or maybe I do it intentionally because sometimes what I see in front of me is hard.

    My son is stills seizing. His anxiety is worse and it is isolating him. The keto diet is particularly hard right now with a lot of sneaking food. The VNS surgery that I resisted for so long has left my son with a vibrato in his voice that occasionally makes him insecure.

    But if I could reach out in to space and pull one of those pictures from the past and hold it up to the present, I would see how different this year is ending than the last. I would see how much progress we have made.

    We met new people and built stronger relationships with the people in our circle.

    We have found a nanny and a tutor that has made our lives better in so many ways.

    We had countless examples of people showing my son and our family immeasurable kindness and compassion, from his baseball coaches making him feel like a part of the team to strangers that saluted him when he wore his Captain America costume.

    After a long struggle, we have our IEP and are getting the supports put in place to help protect my son and get him the education that he is entitled to.

    We were honored by the Epilepsy Foundation Eastern Pennsylvania at their Mardi Gras fundraiser and joined their board to give back to the organization that has given so much to us and others in our community.

    We returned to the National Walk for Epilepsy and my wife and I both ran events at the Philadelphia Marathon to raise money as part of the #AthletesVsEpilepsy team.

    This blog has connected me with so many people.

    And throughout the year, our life was sprinkled with countless tiny, special moments. Like stars shining through the black curtain of space, we only needed to look up to see them. To let them in. And to be amazed by their splendor.

    Last year was a year of transition, taking us from where we were to where we are. I’m looking forward to this year as the year that will get us closer. Closer to my son’s seizure dog. Closer to an answer on the VNS. Closer to each other and to the people around us. Closer to who I want to be. And closer to understanding our place among the stars.

    I’m not great at looking back. And I’m not always good at looking up. But I want to be.

    Maybe that is something to look forward to in 2019.