epilepsy dad

Tag: epilepsy

  • 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.

  • ‘Tis the Season

    ‘Tis the Season

    This year for Thanksgiving, we decided to do something different and we traveled back to Colorado to spend it with our goddaughter’s family.

    Colorado will always be a special place for me. I met my wife there, and we had our son there. We also have some of the best friends anyone could ask for who still live there. But as much as our son wants it to be some days, it’s not home anymore.

    For a few days, though, it felt pretty close, largely because of the people we were surrounded by over the holidays.

    Growing up, my family would gather at my grandparent’s house. There were 14 of us: grandparents, parents, siblings, aunts, uncles, and cousins. My grandmother would cook while the rest of the family would gather in various rooms to catch up. When it was time for dinner, the adults would sit around the big table in the dining room while the kids would be at a smaller table in the kitchen. Even at different tables, we were still together.

    The holidays were different after I moved with my parents to Florida. Occasionally, we’d have family members visiting for Thanksgiving or Christmas, but most of the time, it was just us, and it didn’t feel as festive or warm (except for the temperature).

    I felt that sense of togetherness again when I celebrated Thanksgiving with a friend’s family after I moved to Colorado. Even though I was alone in Colorado, being with a family during the holiday gave me a sense of place.

    The first few years after I met my wife, we began spending holidays with her family, and it wasn’t seamless. A pending in-law divorce with complicated family dynamics made some conversations uncomfortable, and my wife and I were also going through challenges, even before our son started having seizures. We had wonderful moments, but it was never easy.

    Our Pennsylvania holidays were also challenging because our lives continued to become more difficult. With our son’s eventual diagnosis and our struggles with epilepsy, the strain our history put on us and our marriage, and evolving family dynamics and personalities, the holidays weren’t always something we looked forward to. Again, we had wonderful moments, but the effort and stress of pulling it off were exhausting. The holidays sometimes felt like they took more than they gave.

    That is what made this year special. We were with people who were happy and grateful to be together. Even though it wasn’t with the family we were born into, it felt like a family we belonged to and the family we needed. It also reminded me of the holidays growing up, a feeling I wasn’t sure I would ever feel again.

  • Loved and Seen

    Loved and Seen

    I’ve been having a hard time at work recently.

    The other day, I picked my son up from school. As he usually does when he gets into the car, he asked me how my day at work was.

    “Today was rough, pal.”

    After a brief pause, he turned to me and said, “I’ll call your boss and tell them that you’re doing a great job and to not make you work so hard.”

    As his words hit me, the stress immediately left my body.

    It was the perfect thing to say.

    “I really needed that, pal,” I responded. “Thank you.”

    His face lit up with a huge smile. That smile was everything.

    When I got home, I told my wife what our son had said. She was so proud of him, and we were still talking about what he did when he came into the room. He wanted to tell her what he had done, too, because he was also proud of himself.

    After celebrating the moment and its meaning, we told him that taking care of me was not his responsibility. My wife and I came from backgrounds where we often felt responsible for our parents’ feelings, and we wanted him to understand that it wasn’t his job. His job was to continue to be our amazing, empathetic, funny, loving son.

    But we also wanted him to know how wonderful it feels to have someone worry about you. It doesn’t have to be about doing anything or carrying the other person’s feelings. Just giving them space in your thoughts can be enough to make them feel loved and seen.

  • 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.

  • Shaped By Our Suffering

    Shaped By Our Suffering

    When we lived in Colorado, I would see trees on the edge of cliffs as we drove through the mountains. The wind and weather at that elevation could be brutal. But these trees would grow thick roots to ground themselves into the earth, even as their trunk and branches were bent and battered and grew angled towards the sky to withstand the constant pressure from the wind.

    I recently came across the phrase “shaped by our suffering,” which speaks to how difficult experiences can shape a person’s character, perspective, or life path. While painful and often unwanted, the idea is that suffering can lead to personal growth, resilience, and a deeper understanding of life.

    For as long as my son can remember, he has had challenges. He has had seizures, memory, attention, and learning difficulties. He was isolated even before the pandemic and, even now, is often on the outside of many social situations. He had so many dreams taken away from him before he could try to achieve them.

    Through it all, though, his challenges and struggles shaped him into a sweet, empathetic, resilient, and big-hearted person. Those are his roots, which ground him as a person and to this family and keep him from getting blown away by what he endures every day to be in the world.

    His struggles have also shaped me, forcing me to reflect on myself, my life, and my choices and develop a greater self-awareness. The months in the hospital while the doctors, nurses, and support staff kept him alive and rebuilt what he had lost changed my view on life, gratitude, and presence. The strength and grace he shows daily in the face of his challenges guide how I think about and approach challenges in my day.

    The hardship we endured as a family, which tried to tear us apart, formed deeper, stronger connections between my wife and me and in our family. Today, those roots continue to strengthen, ground us, and make us more resilient against whatever comes our way.

    Like the trees I saw in Colorado, we are shaped by the winds of our struggles. The storms we face may bend and scar us, but they also deepen our roots, making us more resilient and grounded in the things that truly matter. My son’s suffering has shaped him into a remarkable person with an incredible capacity for empathy, strength, and love. It’s taught me to live with more gratitude, to be more present, and to face my challenges with the same strength as my son.

    The hardships we endure don’t define us, but they shape us—and sometimes, they make us stronger than we ever imagined possible.