Slow Down

I’m standing with my left foot on the edge of the baseline. I bounce the bright yellow tennis ball a few times with my left hand while my right hand dips low, holding my racquet. I’m ready, so I steady the tennis ball before tossing it high into the air slightly in front of me. I rock backward on my heel, then forward, lifting my racquet to meet the ball’s descent. Contact.

“No, no, no,” my instructor says through his thick French accent. He points upward at the ball that has soared high enough to qualify as a space flight, and that still hasn’t completed reentry.

“Too fast. Watch.”

He takes my place on the baseline and tosses a ball into the air. His movement is controlled and intentional. The racquet methodically completes its arc and makes contact with the ball, sending it across the net where it lands in front of the service line.

“This is you.”

Again, he tosses a ball into the air. But instead of the slow, intentional movement, the racquet disappears into a blur of speed and sends the ball crashing into the fence on the far side of the court.

“When you go slow, you are present…you can control. When you go fast, you can’t.”

“Story of my life, ” I think to myself.

I’ve never been good at slowing down. I’m nervous and anxious and always feel like there is something I should be doing. I’ve created lists upon unending lists of the things that I need to do. Not “want” to do. Need. Must. Obligated to. Compelled to.

But there is only so much time, so I race from one thing to the next. Sometimes, I don’t quite complete the task that I’m doing or do it as well as I could have, but, usually, I don’t look back to check. Checking slows me down. And there is still so much to do.

Often, I don’t remember details because, as it turns out, I’m not there at all. And that, I realize, is part of the problem, especially when there are other people involved. What is the point of doing something with my wife and my son if the goal is to do it so that I can move on to the next thing? I’m not there with them if I can’t slow down enough to be present with them.

None of us knows how much time we have in this world. With my son’s condition, that is a fact of which I am too well aware. It should serve as a reminder that it is the quality of the time we spend together that matters more than the quantity of the things we do. But, as my wife has pointed out too many times lately, I haven’t always been showing up that way. I know she’s right.

Awareness is the first step of change. Acceptance is the second. I’m working on that part. I know it’s time to slow down.

The instructor backs away, and I retake my place on the baseline. I bounce the ball a few times before tossing it into the air. I raise my racket slowly towards the ball. Deliberately. Intentionally. I can feel that my arm is extended. I can feel it when the racquet makes contact with the ball. I watch as the ball flies over the net and lands in the box. It’s a different experience. And it’s the same type of experience I want more of with the people around me, too.

Like Everyone Else

A few weeks ago, we went to a birthday party for one of my son’s friends. It was a small gathering, done safely. We didn’t know the other family there, but they were very friendly, and the kids all got along.

Near the end of the party, we gathered together and sang “Happy Birthday.” After the birthday boy blew out the candles, the other children eagerly reached for a cupcake. My son, however, was sitting off in the corner. I walked over to him. “Hey pal, you ok?” I asked, knowing what the answer would be.

“I don’t feel included.” The words came from his mouth and punched me in the heart. It had been so long since we attended a birthday party that I forgot to make my son a keto-friendly cupcake.

I sat on the bench next to him and put my arm around him. “I’m sorry, ” I said. “I forgot.”

I told him I would make it up to him and that I would make him a cupcake as soon as we got home. But I knew it wasn’t the same thing. He’d be eating that cupcake at home, all alone, instead of surrounded by his friends, participating in what they were doing, being just like them. Right now, he wasn’t included. He was on the outside.

He’s been on the ketogenic diet for so long, and he started so young that it seems like it has always been this way. I take for granted that he’s always had a different meal than us. But, as he gets older, he’s noticing more how that makes him different. At his new school, the other kids have sandwiches and bags of chips for lunch. He brings keto ice cream and a few chips. They have cookies for dessert. He has cheese or macadamia nuts. When they have special events or cooking, he has to eat the substitute we send in. He never gets the same.

Change is on the horizon, though. After more than seven years on keto, we’re moving to a modified Atkins diet, opening a new world of food for him. The other day, we found a low-carb bread and made sandwiches for lunch. As we sat at the table, I smiled and watched him close his eyes and take a big bite out of the middle of his sandwhich. He chewed for a few seconds, then opened his eyes and looked at me, smiling. “I can have sandwiches for lunch at school, ” he said. “Just like everyone else.”

Then Things Changed

This is the first time in months where I have sat down to write.

Before I did, I skimmed my posts from earlier this year. I wanted to be reminded of where we were. Our family felt isolated and trapped in the city, and there was no hope of moving. My son was struggling with his virtual school, and there was no hope of finding a way of learning that would work for him.

I wrote those posts as a way to process my thoughts. I wrote those posts as a way to ask the universe for help. I wrote those posts because I had to get those feelings out. They were real. They are real. Putting them down in writing felt like the last act of acceptance that nothing was going to change.

But then things did change.

I’m writing this post in our new house. I’m writing this post early in the morning before my son wakes up and gets ready to go to his new school that is only a few miles away with kids that have challenges just like him. I’m writing this post the day after my son spent hours in the yard playing with other kids from the neighborhood who didn’t treat him like he was different at all.

The contrast between where we were and where we are is surreal, but I know things won’t always feel this way. My son is still seizing every day. The cognitive, social, and emotional gap between him and his peers is obvious, and it is growing. And the one constant thing in our epilepsy journey, for better and for worse, has been change.

At this moment, though, I am immeasurably grateful to have landed where we did, when we did. Because we needed it. Because we are together. Because we can breathe. And because for the first time in a long time and despite the struggles he faces every day, my son is happy.