epilepsy dad

Tag: family

  • 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.

  • What Matters is the Repair

    What Matters is the Repair

    Hello, Hindsight, my old friend.
    You’ve come to talk to me again.
    Because a mistake I made today
    Left its mark and pushed someone away
    And the shame that was planted in my brain
    Still remains
    With the sounds of silence

    On more than one occasion, my response to an action that my son did was out of proportion to the action itself. Usually, it’s because he repeated the same action, and there is an escalation of consequences. But sometimes, it’s driven by my trauma, insecurities, and fear about my son’s future.

    A few weeks ago, there was the Chocolate Bar Incident that I wrote about in a previous post that involved him lying about sneaking candy. The candy wasn’t the issue; the lying was, and it triggered a knee-jerk reaction to take away his electronics “for I don’t know how long.”

    I was so frustrated with his lying, and I didn’t understand why he was doing it. I had a hard childhood, and I feared that he was lying the same way that I lied because he felt unsafe like I did. I was also afraid that it was because of his impulse control and executive functioning issues. I needed to shock him with extreme consequences to change his behavior and stop him from lying. Otherwise, how could he go out into the world?

    Like I said…out of proportion.

    After I had time to cool off, I felt terrible. Yes, he struggles with impulse control and executive functioning, but so do a lot of people. Also, teenagers lie. It’s normal and doesn’t necessarily reflect on his future possibilities.

    I thought about how I responded and how I should have responded and felt like an asshole. Feelings of guilt and shame washed over me, and I feared that my response would be what stuck with him about this situation and that it would affect or define our relationship.

    I went in to apologize. I shared why I had my reaction, explaining how I was afraid he was having the same childhood and experiences that I did. That fear and projection about his future triggered my response because I wanted to change his path so that he didn’t have to endure the same challenges that I did. But I understand that wasn’t what was happening; it just looked the same. I told him I was sorry, and he accepted my apology like the sweet, kind, empathetic boy that he is.

    That, I am learning, is what will define our relationship. What matters isn’t the mistake. What matters is the repair.

    We all make mistakes. As much as we wish we could be perfect in our relationships, we’re human, which means we’ll stumble, say the wrong thing, or make a bad choice occasionally. Whether it’s a moment of lost patience, a misunderstanding, or a decision we wish we could take back, mistakes are inevitable. But here’s the thing: what matters most isn’t the mistake itself—it’s what happens afterward. The repair is what truly defines the strength and depth of a relationship.

    When we mess up, there’s often a sense of failure or shame that comes along with it. We worry we’ve damaged trust or created distance in the relationship. But the reality is that the most meaningful connections aren’t the ones that never face difficulty. They’re the ones that grow and evolve through those moments. It’s the repair process—the act of acknowledging the hurt, making amends, and working to rebuild trust—that ultimately makes relationships stronger.

    At the end of the day, it’s not the mistakes that define us—it’s what we do after them. We all face moments where we wish we had done things differently, but those moments can lead to greater understanding and intimacy if we approach them with humility and care.

    Our children don’t need perfect parents; they need parents who are real, who are trying, and who are willing to own their mistakes. Children learn more from our willingness to grow than from our attempts to be flawless. When they see us apologize, try again, and love them through the messy parts of life, they learn resilience, empathy, and the value of authentic connection.

  • Discovering What’s Next

    Discovering What’s Next

    Our son is officially a 9th grader, adding to our list of milestones and events we weren’t sure we would see.

    We are very fortunate to be able to start high school in the best way possible. The school he has been at since 6th grade offers a transition year, which we are taking advantage of with the support of our school district. That means he will have the same teachers, peers, and environment to continue his journey for another year. Especially with the looming surgery, recovery time, and uncertainty with his tolerance for calibrating the brain stimulator, keeping him in a place where he is comfortable and cared for is a gift.

    This is going to be a year of changes. Unless higher grades magically appear, this will be his last year at the school, and his peers who have been concentrated at his school will find high schools in their home districts. This will likely be his last year of baseball, as the level of play and competition at the next level may not be something he can manage. His peers will get their learner’s permits and start driving, something he won’t be able to do while he is still having seizures.

    No one knows what is on the other side of these changes. I am sure he will find friends among his new peers and that other interests will replace baseball. While he won’t learn to drive with his peers, there will be other rights of passage to conquer and other ways to grow.

    But many of these changes are still on the horizon. He has 9th grade to look forward to and another baseball season. He has his school, teachers, peers, and friends. He has and will always have his family. And together, we can navigate these changes and discover what’s next.

  • Dream Big

    Dream Big

    The other day, I was driving my son to music camp. The camp was at the same place where he takes his drum lessons but, rather than private lessons, the camp groups the kids into bands that perform at the end of the week.

    When I asked my son if he liked the band experience, I expected his response to involve the difference between lessons and performing or what it is like to play with other musicians. Instead, his response centered around wondering if he would get on the Wall of Fame that the school had of previous students.

    I wasn’t entirely surprised by his response. Very often, his goals involve a championship. When we talk about hockey, he wants his name to be on the Stanley Cup. When we play Fortnite, he wants to be on the leaderboard or have his own skin like the influencers have. He talks about subscribers and likes for his Twitch feed and YouTube channel.

    As a kid, I remember being young and obsessed with getting my initials on every video game I touched to leave my mark on everyone who would play the game after me. At one point, my initials filled the high score screen of a game called Mr. Do that I played every day while waiting for the school bus.

    I played basketball in the driveway and imagined the next shot was a buzzer-beater to win the championship, and I tossed balls in the air and pretended that I faced a full count and needed a hit to win the game. Creating the ultimate clutch scenario and delivering is the dream of many would-be heroes, even those of us who were not destined for sports greatness. It added drama to a sport or game that I loved to play.

    I’ve heard interviews with professional athletes who had the same dreams, except they focused on achieving them. Even at a young age, they would spend hours working on their game, taking slap shots, making free throws, or swinging a bat. They aimed to become a professional athlete and help a team win a championship by delivering in that clutch moment.

    Whether it’s video games, sports, or music, that desire to be the best can be a great motivator. But what happens when achieving that dream becomes the bar? What if whether a dream is achieved becomes the only measure of worth?

    I love that my son has big dreams. For everything he has been through and everything he struggles with daily, he could have just as easily become a victim of his situation and have no dreams at all. But I’m afraid that if he doesn’t achieve his dream, he will resent the experience rather than be proud of himself for what he did accomplish.

    I realize those are my feelings and may not be his. It breaks my heart that his chances of playing in the NHL are minuscule, and because I’m disappointed for him, I’m expecting him to be disappointed, too. But my feelings are based on my frustration and anger at what his condition has taken from him, which probably results in a higher degree of disappointment, just like it results in a higher degree of admiration for what he can accomplish.

    Ultimately, my job as his parent is to let him have his dreams and make it okay, whether he achieves them or not. My job is to instill in him the ability to be proud of himself for his accomplishments and to encourage him to love the experience, the sport, and the time he could do what he enjoys. It’s my job to show him that there is a sense of accomplishment in doing something and then working at it to improve and become the best you can be, even if it doesn’t come with a trophy or picture on a wall.

    I’m a big believer in dreaming. If you don’t dream it, you can’t become it. – Magic Johnson

    Dream big, pal.