epilepsy dad

Tag: parenting

  • The Perfect Storm

    The Perfect Storm

    My wife pulled up a picture of me from a year ago on her phone. At least, I think it was me. The face in the picture had the same thinning hair and the same gray beard, except it was wrapped around a much rounder face. I recognized the shirt that person was wearing because I had the same one hanging in my closet, but it fit much tighter on that person than it did on me.

    Maybe it was the angle, or maybe the picture was altered—people can do all kinds of things with AI these days. Either way, I was suspicious of the image’s authenticity because I was blessed with a fast metabolism. I was the same weight for most of my youth and a consistent, slightly heavier weight for most of my adult life. It didn’t matter how much I worked out or what I ate.

    “When you’re 25 it will change…”

    “When you’re 40 it will change…”

    But it didn’t change. Even if my routines or diet did, everything averaged out to keep me exactly where I was. As I said, I was blessed.

    But then I remembered that, around the time that picture was taken, I had my first physical since the pandemic. As I stood on the scale, the number that appeared was much bigger than I had expected. The lab work that came back also showed markers that led my doctor to discuss medication to treat high blood sugar and cholesterol.

    Maybe that was me in that picture, after all.

    Do you remember the movie The Perfect Storm with George Clooney and Mark Wahlberg? It’s about these fishermen who get caught at sea when a trio of storms merge into, well, a perfect storm.

    That’s what happened to me during the pandemic. The combination of the world shutting down and limited access to my regular physical activity, the stress and unhealthy eating choices that came with it, and the increased fear, anxiety, and depression from extreme isolation and watching my son deteriorate physically and emotionally combined into a storm that consumed me.

    Even after we moved out of the city and the world began to open up, I couldn’t find my way out of it. Even after we found a school for our son and he began to improve, I couldn’t find the motivation to change. The storm had knocked out my engines, and I was drifting at sea.

    My physical exam results were like the light from a lighthouse far in the distance. I was drifting, and they warned me of the rocky shore ahead. I had to decide whether to continue to drift in that direction or try to fix my engine. Like the fisherman at sea, I thought about my family, who depended on me. I thought about the adventures we’ve had and the ones ahead of us.

    I picked up a book by Peter Attia called Outlive that discussed longevity and living better longer—not just living longer but living the life you want in the future. I don’t want to be 80 and sedentary. I want to travel with my family and be able to put my luggage in the overhead compartment on a plane. I want to play basketball with my son, play tennis with my friends, and go on long walks with my wife and the dogs.

    According to the book’s philosophy, I had to consider my future and work backward to the present to prepare for the life I wanted. That meant changing my ways that led to the person I saw in that picture and who stood on the scale in the doctor’s office. If I wanted to continue to be there for my son and family, I needed to fix my engine.

    The timing of this post wasn’t intentional, but it is serendipitous. As we begin a new year, it’s a natural time to reflect on where we are and where we want to go. The world and our lives are stressful enough, and being parents of children with special needs adds another layer of complexity and challenge that often leads to exhaustion, feeling overwhelmed, and depression.

    The decision to change—even in small ways—can set us on a better path. Whether it’s prioritizing your health, finding balance, or being more present for your loved ones, the first step is recognizing the need for change and believing it’s possible.

    Here’s to a year of growth, resilience, and renewed purpose.

  • Rock On

    Rock On

    The image above was 10 years in the making.

    The photograph on the left was taken in July 2014. We were in Philadelphia ahead of our eventual move from Colorado. My wife and son had a long week of exploring and house hunting, and we thought we’d unwind and play games. About an hour after that picture was taken, we’d be standing in the lobby waiting for a taxi and watching our son have his first seizure.

    Over the next 10 years, we’d see our son have countless seizures. We’d have many nights where we thought we would lose him. We would spend months in the hospital saving his life and then years trying to rebuild what was damaged. We would struggle to find his place in the world.

    The photograph on the right was taken at Dave & Buster’s a few weeks ago after our son’s last school day before winter break. As I walked around the corner and saw him pick up the guitar, I had the image of my present-day and my son 10 years ago, like two different realities, crashing together in my mind.

    While we’ve had struggles and challenges in the last ten years, the significance of that moment was that we’ve also had successes and accomplishments. Our son is 15 now, and we’ve had so many years we weren’t sure we would get. He plays baseball, enjoys gaming and streaming, and has friends. He’s in a school for kids like him, which gives him a place to learn and grow.

    When the picture on the left was taken, we didn’t appreciate how little knowledge and control we had over the future. Later that night, any vision we had for the future was shattered. The picture on the right reminded me that we can never predict the future. We can only learn to embrace every moment, victory, and opportunity to pick up the guitar and rock on.

  • 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.

  • Just Right

    Just Right

    I’m sitting on the couch in our living room. A fresh fire is popping in the fireplace, and its warmth and smell are just starting to fill the room.

    My goddaughter is sitting next to me. She’s not my goddaughter, but that’s the most straightforward label to use. When trying to decide on a label, I came up with introducing her as my stepmother to avoid further questions. She came up with, “Oh, you can see her, too?” if someone asks me directly who she is. We have yet to use either of them in public.

    Whatever label we use, she lives with us and is part of our family. It’s been long enough that it’s weird to think there was a time before she was here, but since this is only her first holiday season with us, we want to include her Jewish background in our celebrations.

    This living room is where we come together as a family, and it’s appropriate that it’s where our holidays will come together, too.

    A Christmas tree, the one we’re decorating for Hannakha, lights the room, and sparkles reflect from the silver snowflakes on the blue skirt around the tree’s base. The two chairs that usually sit opposite each other are side by side with a dog in each, along with a Menora pillow in one chair and a reindeer pillow in the other.

    Two blue nutcrackers are on the hutch, one holding a Star of David and one a “Happy Hanukkah” sign, bookending the television. A small silver Menora we received from her grandparents is nearby, missing the candles that will soon be lit.

    Four stockings, each with an initial, hang from the banister. One is for me, one for my wife, one for our son, and the last for our goddaughter. The dogs’ stockings are missing, but maybe we’re hiding them to prevent the dogs from eating them and requiring another surgery.

    It all just feels right. Just like having her here and part of our family feels right. Just like spending time with her family, either in Colorado or when they visit Pennsylvania, feels right.

    As I sit here, taking in the scene, feeling the heat from the fire, the dogs and my goddaughter have all fallen asleep. I can’t help but feel a deep sense of gratitude for our blended families and traditions and our home filled with love.

    Our family may not fit neatly into labels or conventional definitions, but it’s ours—full of warmth, humor, and connections that transcend titles or origins. This season, as we celebrate a holiday that is uniquely ours, I’m reminded that the beauty of family lies in its ability to grow and adapt, weaving new threads into an ever-evolving tapestry. And here, in this room, surrounded by symbols of our shared lives, it feels like home.

    It feels just right.

  • Yet

    Yet

    “Yet” is such a powerful word.

    “Yet” allows us to acknowledge current struggles while leaving space for future possibilities. It’s a bridge between what is and what could be, subtly shifting focus from a fixed state to one of potential.

    There have been so many times when we thought we were out of options when it came to treatments for our son’s epilepsy. We tried all the medications. We tried the ketogenic diet. Because his seizures were generalized, he wasn’t a candidate for surgeries that are available to people who have focal seizures.

    Each time one of the treatments failed to control his seizures, we felt resigned to give up hope.

    But even in the 10 years since my son was diagnosed, there have been many new advancements.

    Genetic testing is being used to identify specific genetic mutations associated with epilepsy, which has enabled personalized treatment strategies, improving efficacy and reducing side effects.

    Epidiolex was introduced in 2018 to treat Lennox-Gastaut syndrome and Dravet syndrome.

    A new surgical technique called Laser Interstitial Thermal Therapy (LITT) that uses a laser to target and ablate seizure-causing brain tissue precisely was approved, reducing recovery time compared to traditional surgery.

    Although it was used off-label earlier, Vagus Nerve Stimulation (VNS), which involves implanting a device that stimulates the vagus nerve to reduce seizure frequency, was FDA-approved in 2017 to treat children as young as 4 years old with drug-resistant focal epilepsy.

    Deep Brain Stimulation (DBS), traditionally used to treat movement disorders like Parkinson’s, is now being used to target brain regions like the anterior nucleus of the thalamus to reduce seizure frequency in individuals with drug-resistant epilepsy.

    We’ve benefited from these advancements. In addition to genetic testing, my son had VNS surgery when he was nine and DBS surgery right before his 15th birthday, even though they weren’t options when our journey started.

    Of course, it’s easier to be on this side of it and say that I always had hope or that I automatically added the word “yet” to the sentence “there is nothing left to try.” I didn’t. I was overwhelmed because everything we tried didn’t stop the seizures. I had almost lost my son, and I was afraid that, with every failed treatment, every door was closing on his future.

    Eventually, I would be reluctant to try a door because that would mean fewer were available. At least with untested doors, there was hope. It’s like in high school, when there was a girl I liked, if I didn’t ask her out, she couldn’t say “no,” so there was always hope for a “yes.”

    What changed for me was seeing the advancements and having them offered. First, there was a new medication, then another, and then the VNS. I saw first-hand how continued progress created more doors, making trying one a little less scary. I began to believe there would be more doors, which made it easier to believe in the word “yet.”

    Right now, our hand is on the DBS door. We’ve cracked it open and are waiting to see what is on the other side. There are never guarantees, but we hope it improves our son’s quality of life. If it doesn’t and we have to close that door, too, when the feeling comes back that there is nothing left to try, I will remember to complete the sentence:

    It feels like there is nothing left to try…yet.