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.

Unnatural Times

Every morning, I like to sit near the window of our condo and look out on to the streets of Philadelphia. I watch as the empty sidewalks start to fill with people. The roads fill up with cars. Food carts appear on street corners. Lights turn on in the office buildings. Mornings are when the city wakes up.

Usually, on weekends, the process is a bit slower. It takes longer for the sidewalks and the street to fill. But eventually, they do, and the city finally comes to life. Not lately, though. There aren’t as many people. There are fewer cars. And not as many lights in the office buildings are turning on.  Now when I look out the window, the city hasn’t been waking up. It’s a perpetual Sunday morning that lasts all day, every day.

Being stuck inside the house is unnatural. We aren’t used to the confinement. We are social creatures and miss those connections and contact with the outside world. Our bodies and our minds start to panic, which is only exacerbated by the fear and uncertainty of the spreading virus. It’s unnatural, but, for me, it also feels familiar.

A few years ago, my son was in a bad state. He was still seizing a lot, and the angry side effects of the medicine he was on came out as rage. He was isolated at home without social contact; no school, no friends, no playdates. My wife stayed home with him, equally isolated. A similar fear and uncertainty blanketed our lives, not knowing how long these conditions would last or, worse, whether they would ever change. Maybe that was going to be our life now, forever.

We couldn’t plan anything. We couldn’t really go anywhere. So we lived in a dark apartment, watching the city through our front window, hoping for something to change. That lasted for more than a year. Eventually, we found better medication and a nanny to help. We got therapy and found our way back to each other. But it was an agonizing and traumatic time, and our current isolation is triggering those painful memories.

Before “social distancing”, things had been better. My son was going to school for half days, but every day this year, which he couldn’t do before. He made a few real friends. We were looking forward to baseball season, bike rides, and summer. But now we find ourselves, along with the rest of the world, wondering what comes next.

It feels like another test of our strength and capacity to adapt to another “new normal.” Fortunately, we’re starting from a better place. My son is doing better. Our family is stronger. And we know that because we made it to the other side of those dark days years ago that we can make it through these challenges, too.

These are unnatural times. But as parents of children with epilepsy, we are no strangers to unnatural times. Hang in there. Remember to be kind to each other. Remember to make room for yourself. And we will make it through together.

The More Things Stay The Same

The only thing that is constant is change. ~Heraclitus of Ephesus

In many ways, our life is constantly changing. We meet new people and have new experiences. There are new projects at work. The changing season is bringing cooler temperatures and color to the trees. Things look different than they did a few months ago.

My son started third grade and has a new teacher, a new aide, and is meeting new kids in his class. He’s in a different place than he was this time last year. He’s a year older. He’s on different medications with different benefits and side effects.

The more things change, the more they stay the same. ~Jean-Baptiste Alphonse Karr

But even with so many things changing, the world looks very much the same.

In spite of the new medications, my son is still seizing. He still labors physically and mentally through the impact of those seizures and the many medications he takes to try to control them.

In spite of the new grade, teacher and aide, the school is still not set up for him to succeed. He still cannot physically or mentally make it through the day. We’re having to explain and defend ourselves again this year, just like we do every year.

In many ways, my son’s life changes so much that it’s unpredictable. But after a while, even that becomes expected. It becomes the same. A change for us would be stability. A change for us would be knowing what to expect from one moment to the next.

But there is no way to control what that looks like. We could find ourselves stuck at the bottom instead of at the top. He could always be seizing. He could always be at the mercy of the cruel side effects of the medicine that keeps his brain from losing control. So, at least for today, I welcome change. Because, as long as things keep changing, there is always hope that things will change for the better.