epilepsy dad

Category: lifestyle

  • 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.

  • 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.

  • Guilt, Shame, and Fear

    Guilt, Shame, and Fear

    I recently stumbled upon a reference to how cultural anthropologists categorize societies based on how they control behavior in those societies as guild-shame-fear.

    I pulled these descriptions from the always dependable Wikipedia:

    Guilt Society

    In a guilt society, control is maintained by creating and continually reinforcing the feeling of guilt (and the expectation of punishment now or in the afterlife) for certain condemned behaviors. The guilt worldview focuses on law and punishment. A person in this type of culture may ask, “Is my behavior fair or unfair?” This type of culture also emphasizes individual conscience.

    Shame Society

    In a shame society (sometimes called an honor–shame culture), the means of control is the inculcation of shame and the complementary threat of ostracism. The shame–honor worldview seeks an “honor balance” and can lead to revenge dynamics. A person in this type of culture may ask, “Shall I look ashamed if I do X?” or “How will people look at me if I do Y?” Shame cultures are typically based on the concepts of pride and honor. Often actions are all that count and matter.

    Fear Society

    In a fear society, control is kept by the fear of retribution. The fear worldview focuses on physical dominance. A person in this culture may ask, “Will someone hurt me if I do this?”

    I was interested in the topic because I have lived at the intersection of all three.

    Until sixth grade, I went to an old-school Catholic school and church, where the nuns still wielded rulers as weapons, and God was always watching and never approving. I can still picture one of the sisters with terrible arthritis, and her hand contorted perfectly to wrap around one of the long wooden chalk sticks. I remember feeling that everything I did was a sin, deserving of punishment, and wrong, deserving of exclusion.

    I also grew up in a household with a single, frustrated, angry mother and an older, equally angry sister. I spent a lot of time trying to be and keep everything perfect to avoid getting punished, always fearful of the hand and the wooden spoon.

    I thought this was normal. As I got older, the voice inside my head would take over for the nuns, my mother, and my sister, reinforcing the messages of guilt, shame, and fear.

    It wasn’t until after I was married and we had our son (and a lot of therapy) that I started to see and understand that my childhood was traumatic and how it affected me as an adult.

    Guilt is what kept me feeling wrong.

    Shame is what kept me feeling alone.

    Fear is what kept me feeling small.

    The behaviors that I developed to help me survive in a state of guilt-shame-fear became toxic in my adult relationships, closing me off to the people I desperately wanted to be close to and spreading out to every aspect of my existence: relationships, love, intimacy, sexuality, self-esteem, friendships, goals, expectations, happiness, comfort, safety.

    What got you here won’t get you there…

    I am on a journey of recovery and untethering myself from my old patterns and beliefs. However, as I go through this process, I want to ensure that my son has a different experience. While we’re not religious, and there (probably) aren’t nuns waiting around the corner, the most likely transmitter of the guild-shame-fear burden is me.

    I still wrestle with my lingering expectations of perfection and fear that I will disappoint the people around me. I still feel the grip of guilt and shame for my actions and who I am.

    While I am very conscious of the words I use when I engage in these topics with my son, it’s not only the words that influence how he interprets these messages. It’s how he sees my relationship with these feelings that will demonstrate what his relationship with the feelings should be. Even when I think I successfully internalize or hide these feelings, I know I am not that good of an actor. Their effects are visible on my face, body, voice, and how I present myself to the world.

    In many ways, the work my wife and I have done has created a very different environment for our son than either of us had. I can see that in how he interacts with the world. He isn’t fearful like I was and is one of the bravest people I know. He feels guilt when he does something wrong, not thinking everything he does is bad like I did. And his relationship with shame is much healthier than mine, and he can also feel dignity and positive self-esteem.

    It’s not perfect, and we’re continuing to equip ourselves with the knowledge and tools we need to continue to develop a healthy relationship with these feelings in ourselves and him. But I see such a difference in him compared to what it was like for me growing up, and seeing that difference gives me hope that I can continue to make changes for myself, too.