Category: epilepsy

Where Do We Go From Here

I’m coming up on the 8th anniversary of the Epilepsy Dad blog. That’s more than 200 posts documenting our journey since my son was diagnosed with epilepsy in 2014.

The beginning of that journey was pure chaos. We were coming through nearly losing our son when the doctors couldn’t control his seizures when I wrote my first post. I captured the endless and severe side effects of the medications we tried. I shared our experiences with therapy as my son lost control of his emotions. I documented every attempt to control seizures, from CBD to the VNS, that were never able to silence them fully. And I captured not just my son’s challenges but the impact that this complicated condition had on my family and me.

Admittedly, the last few years have been sporadic with posts. I’ll get the inspiration to write when we reach a new milestone or when we encounter a new setback, but largely it’s gotten more difficult to find that inspiration because our life feels pretty settled.

Settled. It’s a strange word to be using. My son still seizes every day. He still takes handfuls of pills multiple times a day. He still struggles in school, socially, and emotionally. His future is still uncertain. From the outside, it must look anything like being settled. But this is our normal. This is our every day, and less and less does anything happen outside that normal.

That’s not to say that we don’t celebrate the exceptions when they do happen, no matter how small. A good report from his teachers or doctors. A hit at a baseball game. A dominant win at Uno. We also have the good fortune to have had amazing experiences and see interesting places. In many ways, we’ve worked hard to get to this place so that this could become our normal, in spite of the challenges.

But where do we go from here?

When I sat down to write, my intention was to make that question about the blog. What else is there to write about? What other part of our story was there to write about when most days feel like a re-run of the previous day?

It was different when the blog started. I used this blog as a way to process my thoughts and feelings about my son’s diagnosis when every day brought new challenges, or when I was reacting to a new obstacle or achievement. It felt like every day there was something to write about, then it was every week, then every month. And now, I’m writing about how there isn’t much to write about.

As I pondered that thought about the blog, though, the act of writing down my thoughts changed to thinking about the future of my son and our family. So much of the last few years have been reactionary, but now we’re trying to shift our gaze from looking backwards to looking forward. From being reactive to being proactive.

Where do we go from here? Forward. Where we go from here is to experience what is ahead of us. Where we go from here is unwritten and unknown, but it is also something we can influence and contains the potential that we can work towards. And maybe, there will be something to write about.

I don’t plan on shutting the blog down, but posts may not be as frequent as we step into the future. But I hope you’ll check in. I hope you’ll be in touch, whether its leaving a comment or sending me an e-mail. And I hope, wherever you are in your journey, that when you find your normal, you can be grateful for the progress, make the most out of every single moment in the present, and be hopeful and intentional about the future.

Walls and Doors

A few weeks ago, we attended the yearly fundraising event for my son’s school. The event was an opportunity to interact with other parents, teachers, faculty, and board members and to collectively celebrate that a place exists for kids like my son.

This year, the guest speaker was a Hollywood movie producer who attended the same school when he was my son’s age. The producer accepted the school’s Achievement Award and gave an emotional speech about how much the school helped him learn and grow and how it changed how he felt about himself and his outlook on the future.

Earlier in the day, he spent time with the kids, including my son. The kids worked together to create movie pitches and presented them to the producer. My son came home beaming, feeling proud of himself for his accomplishment, and also because the producer gave my son the inside scoop that there would be another Captain America movie.

We didn’t learn all the details until we spoke with one of my son’s teachers at the fundraising event. He often has a hard time remembering and sharing details, but his teacher was so proud of him, and we were equally proud and grateful that the producer had spent time with the children.

In his speech, the producer talked about his experience with the kids. He said it reminded him of what it was like to find a place like this school after struggling for so long in other schools. He looked at the faces of the kids and wanted to inspire them and show them that, even though they have challenges, with a loving family and by the right support, anything was possible.

When he said that, I felt a light come on.

I think a lot about my son’s future. I wonder what he will be capable of, and what options will be available to him. Often, those thoughts are about the things he won’t be able to do because I see how much he struggles today. But I think a part of that is because we traveled so much in the unknown, without the type of support that schools like this provide. Based on our experience, the unknown is dark and scary, and we spent so many years navigating potential futures in that dark, feeling around for a way out.

When it’s that dark, everything feels like a wall.

But that moment in the producer’s speech when the light came on made me think about how much our life has changed in the last few years. Our new home in our new town, my son’s new friends, and my son’s new school have all changed his life. They’ve changed our life. The school, in particular, has given him a sense of belonging in a safe space and the tools he needs to learn. He is surrounded by other kids like him. He is being taught in a way that works for him. And now, he’s seeing examples of what other kids like him have done.

The school has provided light in the dark, and, for the first time, we can see a little further ahead.

It’s because of that light that, for the first time, we can see that we’re not just surrounded by walls. We can see doors, too.

Catalysts of Change

A couple we are friends with were pregnant right before the pandemic began. We were excited for them, and my wife was more excited about the opportunity to hold the baby. Then the pandemic happened, and it would be almost two before we saw their son other than at a distance or through a window.

As the world has opened up a bit more, we were able to spend some time with them. Their son was already walking and saying words, and it was wonderful to see how happy he was. It was also wonderful to see how our friends had changed and opened up since their son arrived.

It made me think of how much I had changed, not just when our son was born but also after he was diagnosed with epilepsy and all the challenges that presented.

There are obvious reasons why having children changes us. They are completely dependent on us for everything, and that requires an instant upgrade of our maturity and level of responsibility. We lose some of our selfishness, and our choices become less about us. We start thinking more about the future. Having children takes us out of ourselves and expands the context in which we live.

It’s hard to change patterns that have been with you since you were young. I think most people say they want to be better parents than the ones they had but then wind up doing a lot of the same things our parents did, anyway. Having a child may be an opportunity to do differently, but that doesn’t mean we can or do.

When our son was born, I started on my journey of growth. I thought more about the example I would set for my son and the type of father I wanted to be. But I was a mess, and having him shone a big spotlight on how far I had to go both as a father and as a husband. I second-guessed everything because the weight of the responsibility was unlike anything I had experienced before. That insecurity caused me to go inward and protect myself, which pulled me further away from what I should have been doing for my family.

Eventually, we found our groove, but it felt more like a plateau than a destination. I did change, but just enough to keep things together and to move forward. We did family things, and I was progressing at work and felt like I had figured some of it out, but life would throw in a twist and let me know that I had barely started.

The first seizure was a wake-up call, like an alarm clock, but we were able to hit snooze. The second seizure, though, let us know that it was time to get up. The rapid deterioration of my son’s condition meant that I wouldn’t be able to sleep again.

There were years when it felt like everything was hanging on by a thread, both my son’s health and our family. The challenges we faced were impossibly difficult and not something for which anyone could have been prepared. When things were good, I pretended like they were always good. When things were bad, I disappeared into myself or into work or a dark hole, anywhere to avoid the fear and pain and struggle.

It took time, patience, therapy, and my son stabilizing before I could get out of that hole. I could have lost everything while I was in there. I almost did. But when I climbed out, my wife and my son were still there.

In the past few years, I have done more to become the husband, father, and person that I want to be than I have at any other point in my life. Even going back through old posts, I remember those difficult times and can see a record of my progress. I can look around and see how much closer I am to my wife and how intentional and present I try to be with my son.

But I’m not done. There is more to do. This is a lifelong journey of growth, with the course adjusted at each milestone. Milestones like having a child. Milestones like nearly losing a child. These events are opportunities to grow if we let them. And we should. The stakes are too high to ignore them. And the rewards are too great to ignore.

Welcome the change.