epilepsy dad

Category: lifestyle

  • 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.

  • Thankful and Grateful

    Thankful and Grateful

    Today is Thanksgiving in the United States.

    While we aren’t the only country that celebrates Thanksgiving, the holiday is widely celebrated in the United States as a time of gratitude and togetherness.

    In our household, we have a nightly routine that has evolved over the years. It includes reflecting on something we are grateful for. Even if we are too tired to do the full routine, we never skip our “grateful for.”

    That led me to wonder about Thanksgiving being a day about gratitude and the difference between being thankful and grateful. According to the vast library of truth that is the internet, gratitude encompasses both being thankful and being grateful, but even though the terms thankful and grateful are often used interchangeably, they have subtle differences in meaning and emotional nuance:

    Thankful

    Definition: Being aware of and expressing appreciation for something good that has happened or for a specific benefit received. Thankful is usually tied to a specific moment or event (short-term and outward-focused).
    Focus: Often more situational and reactive; tied to specific actions, events, or gestures.
    Example:
    “I’m thankful for the gift you gave me.”
    “She felt thankful for the sunny weather during her picnic.”

    Grateful

    Definition: A deeper sense of appreciation and acknowledgment, often tied to an enduring or broader sense of thankfulness. Grateful reflects a more profound, ongoing state of appreciation (long-term and inward-focused).
    Focus: Goes beyond immediate circumstances and often reflects a heartfelt acknowledgment of a relationship, life situation, or intrinsic value.
    Example:
    “I’m grateful for having a supportive family.”
    “He felt grateful for the lessons he learned from his challenges.”

    With my newfound knowledge of the nuances of gratitude, I think about how it applies to the language I use in the context of my son’s epilepsy.

    I am thankful that our son has access to medicine that helps reduce his seizures. I am thankful for the doctors and nurses who cared for him during his surgery. And I am thankful he has a friend who helped him catch up when our son returned to school.

    I am grateful for the support of his friends and his school. I am grateful to live where he can access specialists and get the care he needs. I am grateful for the lessons I have learned from our son’s challenges.

    I’m not sure it’s perfect, but in the end, regardless of the words we use, it’s the feeling that matters. Gratitude improves our overall well-being and strengthens relationships by fostering positive emotions, encouraging mutual appreciation, deepening connections, and helping us focus on the good in ourselves, others, and the world around us.

    On a day intended to celebrate gratitude and togetherness, I think that’s what matters, whatever language we use.

    Because this post mentions Thanksgiving, it’s also important to be mindful that its origins are tied to events that some Native Americans associate with colonization and the loss of land, culture, and lives. If you’d like to learn more, please read about the National Day of Morning, which is observed by many Native Americans on Thanksgiving and is a time to honor their ancestors and reflect on the historical and ongoing injustices faced by Indigenous peoples due to colonization.

  • Breaking the Cycle

    Breaking the Cycle

    When our son was seven years old, after he had mostly stabilized and we had left the hospital, we began teaching him how to ride a bike. Or, rather, we began to reteach him how to ride a bike. The motor skills he developed riding a balance bike when he was three and then a bicycle with training wheels were wiped away and replaced by imbalance and ataxia during the early years of his seizures.

    We brought his bike to a city park and found a quiet corner near the grass. I got him on his bicycle and ran behind him, pushing from behind as he found his footing on the pedals towards my wife further down the path. After he found the motion, I would slow down, and he would continue under his own power until he reached his mom, who would help slow him down and repeat the sequence to send him back to me.

    I learned to run a bike the same way. My mother and grandfather pushed me on the street in front of my grandparent’s house for hours until I could ride alone. My mother probably learned the same way from my grandfather, who probably learned the same way from his parents. In many ways, parenting is a hand-me-down exercise where we learn how to be a parent from our parents.

    But what happens when the approach or behavior that was done to you is not what you want for your child? Whether it’s because new information invalidated an outdated approach or times have changed, the techniques may not apply today. Or, for many people, we’ve learned what was done to us is considered abuse and is not a legacy we want to pass down to our children.

    In those situations, our references are tainted. What we know is unusable. The only option we have is to figure it out for ourselves.

    Figuring it out is the scary part. I’m constantly afraid that I’m not doing the right thing as a parent and that I will end up doing it worse than my parents did.

    But maybe the fear is a sign that we’re on the right path.

    It shows that we’re not just blindly repeating the past but actively trying to do better. Learning to parent without a perfect roadmap is daunting, but we are making progress every time we break a harmful cycle or approach our children with more empathy and understanding than we were given.

    We may not have all the answers, but we have the ability to grow, adapt, and create a new kind of legacy—one built on love, effort, and the determination to raise our children with more care than we received.

    And in the end, that might be what matters.

  • Perceptions of Time

    Perceptions of Time

    A nurse led us into the recovery room, where the first thing that struck me was the stark change in my son’s appearance. His familiar Bryce Harper haircut had been replaced by a closely shaved head, but it wasn’t just the missing hair. As we rounded the bed, my wife and I froze. There, across our son’s skull, were the sutured incisions, and beneath the skin, the faint, raised outlines of the leads that connected deep into his brain, extending down to the generator implanted in his chest.

    We both gasped, instinctively reaching out, trying to bridge the chasm between shock and reassurance.

    I don’t know what I was expecting. Maybe nothing could have prepared me for the reality of seeing those physical marks—a visceral reminder of just how serious his condition is. It was more than jarring. It was a harsh collision with the truth that no matter how much we try to normalize life, this—his reality—is never far away.

    Seeing him reminded me of the last time he was in a recovery room after having his VNS implanted. The visible signs of that surgery were less intense. However, it was still our little boy sleeping on a bed in front of us who had, only hours earlier, been sedated and opened up on an operating room table, then carefully stitched back up after inserting a few extra parts.

    The DBS and the VNS were only two of the many procedures that our son has had at this hospital, the same hospital that saved his life and the same hospital that continues to look for ways to improve it. He’s had almost every type of scan, given gallons of blood, taken piles of pills, received tons of therapy, and otherwise been poked, prodded, and tested in every way possible.

    After he woke up, he was moved to the neurology floor, which had been our second home for a long time. Once we settled into his room, a wave of comfort washed away the shock and anxiety of the surgery. With that comfort also came the familiar change in the perception of time.

    Time on this floor doesn’t pass the way it does in the outside world. Inside these walls, it feels suspended, each moment stretching out between visits from the doctors, nurses, and support staff. We’d sit on the blue couch that doubled as a bed, gazing through the windows at the city rushing by below. We’d try to fill our time with distractions—phones, TV, bingo—but no amount of distraction makes the intervals between visits any shorter.

    Minutes stretched to hours stretched to days as they monitored our son, and we waited our turn for the final scans he needed before we could go home. To our real home, not this second home. To the real world, not this isolated, supportive, comfortable world. To the place where we would now wait, again, for our son to recover and to see if the procedure and the device make a difference.

    Looking at the past, at everything that happened to get us to this point, time passed in a flash. In the hospital, in our bubble of comfort and support, time stood still. Looking at the future, waiting for another answer, time stretches out for eternity.