There Is No Blue Wire

We don’t really know how long our son was in status epilepticus.

We had moved to a new city only six months before, around the time when my son had his first seizure. He had his second a few months later, which lit a fuse inside his brain. We started to see more “ticks”. I didn’t think anything about them, at first, because they looked very different from the seizures we saw. But he started having more of them. The fuse was burning and it was quickly reaching the explosives.

In movies, when a hero defuses a bomb, it’s very dramatic. She’s on the radio with the experts who are talking her through the process.

“Take off the cover.”

Our hero unscrews the cover, exposing a spaghetti of wires. “Done,” she says. “I see the wires.”

“Now, “ a voice says through her earpiece, “carefully trace the wires back to their source. You should see a control board with a power source.”

Our hero uses the back of her hand to wipe the sweat from her brow. She squints her eyes as she uses the screwdriver to carefully push wires out of the way to reveal a circuit board with a series of glowing lights.

“Done. I see the board, ” she confirms.

“Ok, coming off the back of the board you should see a red wire and a blue wire. You need to cut the blue wire.”

Our here slowly grabs the wire cutters from her pocket. In her left hand, she uses the screwdriver to push back the wires further. As she starts to weave the wire cutters into position with her right hand, she stops.

In movies, when a hero defuses a bomb, there is a blue wire. In our story, there was no blue wire. The spark ignited. The bomb exploded.

Inside my son’s brain, an uncontrollable chain reaction began and sent electricity coursing through every cell. His body contorted. He was disoriented. He slept. The cycle repeated for days as another team of doctors tried to contain the secondary effects of detonation, like stopping the spread of radiation after Chernobyl.

While the doctors managed to prevent the worst possible outcome, the damage was done both from the seizures and the tactics employed to put out the electrical storm. We’re still dealing with those consequences years later. But our son is here, and he’s happy, and we are grateful.

 

Yes, And…

We didn’t ask for this. One day, we woke up the same way we always did, and that night we were walking back to our hotel room from the hospital in a strange city after my son had his first seizure.

That was six years ago.

For many of those years, I fought what was happening. I didn’t want it, and I thought if I resisted it that it would go away. I looked at what was happening, and I led with “no.”

That “no” manifested as resentment and anger. I wasn’t angry at my son. I was angry at epilepsy. I was angry at seizures. I was angry at the medication and the side effects. I was angry at the universe for doing this to my little boy. The seizures, the meds, the side effects. The impact on his future.

Even though I wasn’t angry at my son, based on the way I was acting, to him, it probably felt like I was. I worried that he was internalizing what I was projecting. For years, he walked around saying, “I’m sorry” every time I corrected him or asked him to do something.

I tried to change how I was showing up for him. Instead of fighting what was happening with a “no,” I moved on to a “yes, but…” I admitted that epilepsy was happening, but made excuses so that I wouldn’t have to give in to that reality fully. “Yes, this is happening, but someday it won’t.”

The “but” in “yes, but…” wasn’t about giving up hope. It was about a lack of acceptance. There was still that resistance that got worse as things with my son got better. Instead of a bump in the road, every setback, every new symptom, every increase in seizures felt like falling off a cliff.

That falling, too, surfaced as frustration and resentment. I had little tolerance when things weren’t right. I would snap when the smallest thing went wrong. I thought that I could correct our way out of this if I could get everything perfect. I kept trying to control and change the situation into something that it was never going to be.

When we are no longer able to change a situation – we are challenged to change ourselves. ~Viktor E. Frankl

In the world of improv comedy, there is a concept of “yes, and…” The idea is that a participant takes what is given and adds to and expands it. Instead of “no” (the brick wall) or “yes, but..” (the resistance ), the “yes” encourages acceptance and the “and” expands.

Yes, my son has epilepsy, and he is amazing. Yes, he has seizures most days, and he also goes to school and plays baseball and loves Fortnite. Yes, we are on a different path than we thought we were going to be, and the future is full of new possibilities.

I’m not going to lie, even as I typed the sentences above, I struggled to think of the “and…” My brain isn’t wired to find the positive in impossibly difficult situations. But the more I do it, the easier it will become. The more I practice, the more my brain will automatically find the possibility.  I can’t change the situation, but I can change how I approach it and how I engage with him. Because he truly is amazing, and he needs to feel that from me.

Yes, my son has epilepsy, and I am the luckiest dad there ever was.

The Perfect Picture

Years ago, I was really into photography. I still take pictures, especially when we travel, but I used to be a student of the art. I would read and research the science of photography, explore the styles of other artists, and spent a lot of time working with the tools that turned pixels into photographs.

I experimented with different subjects and techniques. We lived in Colorado, so beautiful landscapes were right outside our door. I also took headshots and pictures of performances for my wife’s musical theater school. I had a few images published and got to photograph one concert with an official press pass. But a special treat would be when friends would ask me to take pictures of their families.

I loved capturing those images and still smile when I see a picture I created years ago handing on their wall. But it was stressful. I felt a lot of pressure to take a picture that they would love and not disappoint them. I wanted every image to be worthy of hanging on their wall, but so much needs to go right to create that perfect picture.

Some things I could control. After a lot of trial and error, I created a checklist to remember to charge batteries, format memory cards, check the camera settings, clean the lenses, and other technical items to get ready for the shoot. We’d pick a location ahead of time, and the right time of day to try and get the best light. And we’d talk about clothing to have a few options ready that would look good on camera.

There were things that were outside of my control. A change in the weather or an unforgiving wind. An irritable, teething toddler hopped up on ibuprofen. But if you can take care of the things that you can control, you can mitigate the uncontrollable things and still have really good odds for things to line up for that perfect shot.

When we were staying in Maine earlier this summer, we attempted to take our own family pictures. I went through the checklist I keep in my head to get my camera ready. We all got dressed in our “Summer Maine casual” attire that included the nicest of the Marvel T-shirts that I packed, since I only packed Marvel T-shirts. We primped and preened. And then we headed to the beach.

The lighting wasn’t quite right, but we found a few locations that would work. I took a few pictures, but it was clear that my son was having a hard time listening and staying focused. We took a few more pictures, but he seemed to be somewhere else. We tried to push through, but eventually we were all too frustrated to enjoy the process and it was showing up in the pictures, so we stopped.

Back in the house, my wife and I were reflecting on what happened, and why this seems to be a regular thing. She pointed out that we didn’t set ourselves up the right way. We should have known better than to ask him to do something that he wasn’t capable of doing because we didn’t set him up to be able to do it.

She was right. We know that if we need him to be present and capable of doing something that requires a lot of focus and attention, we need to prepare him. We need to give him his meds at the right time, eats at the right time, and that he gets enough sleep. We need to balance cognitively difficult task with “brain breaks”. We need to structure the day and our activities in order to succeed. Just like my camera checklist, we have one for our son that removes as much uncertainty as we can from a complex condition. We have to control what we can because there is so much about his condition that is out of our control.

Looking back, we didn’t do that. I ran through the checklist for the camera, but we neglected to do it for our son. We let our guard down and took for granted that we had a few good days, so we thought we could coast into success. But that’s not the way it works. And the result was, rather than a fun experience, that we all felt disappointed and frustrated.

We spoke with our son later that night and apologized for our part in that frustration. The last thing I wanted was for him to take all the blame and carry any shame from that experience because of how we might have reacted. He is getting older and he is capable of taking responsibility for his actions, and he said he was sorry, too, which was amazing. He understood that we all made mistakes and, most importantly, that, no matter what, he was wonderful, and supported and loved.