epilepsy dad

Tag: family

  • 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.

  • ‘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.