Tag: parenting

No Joy In Mudville

Spring is here, and in our house, that means baseball. My son loves to play baseball. I always thought we would be a hockey family, but playing hockey wasn’t in the cards for him. The nature and flow of baseball, however, made it the perfect game for where my son is physically and cognitively.

We’ve been lucky in the last few years with coaches, too. They let him play. They encourage him. They teach him. They make him feel like a part of the team. And they keep the game fun.

I, on the other hand, feel like I’m doing everything that I can to suck the joy out of this game that he loves.

One day last week, I took him to practice. His practices are in the evening, which makes it harder for him to concentrate, especially after a long day and school. That day, he also had a nap shortened by a seizure, and he’s been having more seizures at night. It was not ideal, but it also wasn’t new.

He usually pulls it together for the hour, but he was a little off that night. He was having a hard time listening, and I could see that he was having a hard time physically. His muscle memory was failing him. Actions and movements that were generally automatic for him were labored or forgotten.

I got extremely frustrated. Not really at him, but for him. I was mad at epilepsy. I was jealous of the other kids and parents who just show up and don’t have these struggles. But all that frustration comes out channeled at my son. “I’m sorry,” he’d say, as I huffed as I turned to retrieve another wildly thrown ball. “I’m sorry,” he’d say, as I asked him to stop diving into the muddy ground. “I’m sorry,” he’d say, as I explained to him why a ball got passed him.

During the scrimmage, the coaches were figuring out who should pitch next and my son went up and said that he would. At first, the coaches were reluctant, but then one challenged him and said, “If you can throw me three strikes, you can pitch.” My son stepped to the mound and threw only three pitches to the coach. All strikes.

When he faced his first batter, I could see my son go into his head and play as he does in his room. He pretended that the catcher is signaling pitches and shook them off. He tossed the ball in the air like they do in the movies. And then he threw a pitch nowhere near the plate.

From the sideline, I yelled at him, but he wasn’t listening. In between batters, I walked up to him and tried to help him focus. “I’m sorry,” he said. He managed to get some pitches over the plate but walked the first two batters. The third batter crushed the ball but it was caught and thrown back to first base for a double play. Two outs.

They let my son continue to pitch. He was so excited, in spite of my yelling. In spite of my frustration. He walked one more batter but then struck out the next batter to end the inning.

That night, I was sad and embarrassed. I made a big deal out of how well my son did, but inside I’m feeling the shame of blanketing practice with the sound of my voice yelling at my son. But it didn’t feel like an isolated incident. I think it helped explain why my son apologizes so much.

Before he drifts off to sleep, I tell my son that I can’t imagine baseball is very fun for him with me yelling at him all the time. I told him I’d do better. And I will. My son finds joy in a lot of things, but baseball holds a special place in his heart. I would hate to take that away from him.

A Movie Script Ending

Our journey with epilepsy has the makings of a movie.

It has the time before. The time before epilepsy. The time before seizures. The time before medication, and side effects, and surgery.

It has the inciting event. The first seizure in the lobby of the arcade. The second seizure onboard an airplane. The “ticks” that turned out to be seizures that snowballed into status epilepticus and months in the hospital. The days when my son couldn’t talk or move. The night when my son was surrounded by a team of doctors trying to save his life.

It has an enemy and its name is Epilepsy.

It has the struggle. Every day. Early morning seizures. Exhaustion. Navigating the world in a fog. Trying to keep up. Learning. Behavior. Therapy. Rebuilding.

But it doesn’t have an ending. In the movies, the hero faces challenges, defeats the enemy, and returns home victorious and transformed. But we’re still on the journey and there isn’t a clear path home. Our enemy is one that he could face for a lifetime.

I started this post years ago. It sat unfinished, but I had an idea of how I would end it.

Compassionate people reassure us and say some children grow out of their seizures. We smile and nod, but its like they are watching from the seats in the theater but we’ve seen the script. We know what’s going to happen next but don’t want to reveal any spoilers. If they knew the ending, this isn’t a film that most people are going to hang around to see. Because people love a happy ending.

I wrote that at a time when things were exceedingly hard and relationships with the people around us were being tested. Some of those people are no longer in our lives. But, in spite of how I felt it was going to play out at the time, some people stayed. We’ve gone from feeling as if we were always going to be alone to cherishing what we have. Who we have.

It is true that our story may not have an ending, but it does have one more thing. The journey revealed many lessons about ourselves and the people around us. It showed us who is in our corner. The struggle forged stronger bonds. The journey has given us allies and surrounded us by our village. Our people. Our family. And we draw so much strength from knowing that we are not on this journey alone.

“There are no words to express the abyss between isolation and having one ally. It may be conceded to the mathematician that four is twice two. But two is not twice one; two is two thousand times one.” ~GK Chesterton

The Fog

“Do you understand?”

“Not really.”

We’ve had countless conversations with my son that all end the same way. We’ve tried repeating ourselves. We’ve tried to use smaller words. We’ve tried to use fewer words. But too many times, that process inside his brain that converts what he hears into something he understands breaks down.

It could be related to his seizures. It also probably has something to do with the handfuls of pills he swallows every day. But he lives his life surrounded by a thick fog and he struggles to find his bearings.

In conversations when we’re trying to explain something new to him, I can see a faint recognition. It’s like seeing a shape through a really thick fog. He knows there is something there, but he doesn’t know what it is.

When we talk about a memory, even a big event, he has the look of seeing the edge of something familiar that he knows he should recognize but he can’t really place what or where the object is.

In those moments when he can recall something, it’s like he is looking at something only a few feet in front of him. But then it backs away into the thick, white cloud and is lost again.

It makes me think of trying to navigate a new city that is covered by fog. You might know the general direction to start in, but haven’t yet memorized the entire route. The tops of the buildings are obscured by the fog, so you navigate by finding landmarks at ground level. Most of the references are unknown. Occasionally you’ll find one that looks slightly familiar but is unhelpful because you don’t have the context of where it sits in relation to anything else. When you find something you recognize, you get the brief satisfaction of knowing where you are. You might turn in a certain direction. But as soon as you step away from it to continue your journey, you’re lost once again.

We do our best to help him. We’re pointing out the landmarks, hoping that he’ll recognize more of them so that he can more easily know where he is. We’re getting him help so that he can develop the skills that he needs to find his way. And we’re calling out to him when he is too far away to see us so that he knows that we’re still there. But there is nothing we can do to lift the fog itself.