lifestyle Archives - Epilepsy Dad

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 Whether it’s because new information invalidated an outdated approach or times have changed, the techniques may not apply today.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

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

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.