Tag: life

Rock On

The image above was 10 years in the making.

The photograph on the left was taken in July 2014. We were in Philadelphia ahead of our eventual move from Colorado. My wife and son had a long week of exploring and house hunting, and we thought we’d unwind and play games. About an hour after that picture was taken, we’d be standing in the lobby waiting for a taxi and watching our son have his first seizure.

Over the next 10 years, we’d see our son have countless seizures. We’d have many nights where we thought we would lose him. We would spend months in the hospital saving his life and then years trying to rebuild what was damaged. We would struggle to find his place in the world.

The photograph on the right was taken at Dave & Buster’s a few weeks ago after our son’s last school day before winter break. As I walked around the corner and saw him pick up the guitar, I had the image of my present-day and my son 10 years ago, like two different realities, crashing together in my mind.

While we’ve had struggles and challenges in the last ten years, the significance of that moment was that we’ve also had successes and accomplishments. Our son is 15 now, and we’ve had so many years we weren’t sure we would get. He plays baseball, enjoys gaming and streaming, and has friends. He’s in a school for kids like him, which gives him a place to learn and grow.

When the picture on the left was taken, we didn’t appreciate how little knowledge and control we had over the future. Later that night, any vision we had for the future was shattered. The picture on the right reminded me that we can never predict the future. We can only learn to embrace every moment, victory, and opportunity to pick up the guitar and rock on.

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 His familiar Bryce Harper haircut had been replaced by a closely shaved head, but it wasn’t just the missing hair.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.