Category: parenting

Out Of The Storm

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” ~Haruki Murakami

We never saw the storm coming. Before we knew what was happening, we were surrounded by it. The pounding rain and furious wind disoriented us and knocked us from the path that we were on. And the lightning. The lightning shot through my son’s brain and contorted his tiny body. With relentless force, it changed our lives forever.

When the storm first hit, it scattered us. It pulled us away from each other and left us feeling lost and alone. I was angry at the storm. Angry for trying to take my son. Angry for trying to take my family. Angry for making me feel helpless. I shouted at it. I kept shouting, but it didn’t relent. Even after I lost my voice, I kept shouting until I realized that shouting wasn’t going to help me find my family. So I stopped shouting and began my search.

It took awhile for me to catch my bearings. The storm forced me to shed some of the baggage I was carrying to make progress and move forward. My wife was on a similar path, and she had started moving forward, too. Eventually, we found each other through the endless rain. We found our son, too. His frail body was exposed to the storm more than ours and we weren’t sure if he would recover. So we took turns covering him until he was finally able to move. Tired, battered, but together, we set off as a family to find our way through the storm.

It was years before we could see even a few feet ahead of us. Years where our hands would slip for each other’s grasp but we managed to reach for each other before we slipped too far apart. Some days we would take turns carrying our son or carrying each other. We kept moving, but it felt like we were going in circles. The storm would seem to let up only to return in force with another step. We’d tread over the same ground, seeing the footsteps we’d left pooled up with water.

After years of wandering, we stopped walking. If we weren’t going to make it out of the storm, we knew we needed shelter. At first, it wasn’t much. The wind would easily push over our weak walls, forcing us to rebuild. But we learned and built stronger walls. When the weight of the rain was too much and collapsed the roof, we rebuilt it, too, stronger than it was before. We found other people who were in the same storm, and we helped each other. And there were people living outside the storm who would send in their support, too.

Today, we find ourselves both out of the storm but still in it. We can see it through the window, threatening to take down our shelter if we let our guard down. So we continue to reinforce the walls we used to build it. We’re doing it as a family, closer than ever before because of the journey we are on together. None of us are the same people that we were when we walked in. We are changed. Tighter. Stronger.

The storm isn’t over and it won’t give up. And neither will we.

July 3, 2018
That Parent

The stories about the overly competitive sports parents are true. I’ve seen them in the stands yelling at their kids, yelling at the coaches, and yelling at the umpires. They’re the parents trying to make their kid the next Micky Mantel, or Jackie Robinson, or Randy Johnson. Or they’re the parents that felt robbed of a chance to be the star and are reliving their glory days through their children.

I never wanted to be that parent. When my son started playing hockey, it was because he wanted to. When he moved on to baseball, it was because he wanted. He loved it. I thought my great advantage was that I never played organized sports as a child so I had no delusions of fame and fortune for myself or him. He could play a sport because he wanted to without fear of it being a proxy for my unfulfilled dreams or the pressure of making it his career.

But at a recent game, I caught myself yelling at my son about his mechanics. Get your elbow up! Keep your eye on the ball! I yelled to get his attention when he wasn’t in the right position or was playing with his hat. What are you doing? Pay attention!

During one of his at-bats, I was louder than his coaches. I could see that he was anxious and overwhelmed by all the other voices coming in at him. I knew he was also nervous because he was in a hitting slump. I wanted to be louder so that he would focus on my voice because I thought that would settle him down. When he struck out, I got mad at everyone else for yelling at him and distracting him. When my wife tried to talk to me, I snapped at her. Then, it hit me.

I had become “that parent”.

I tried to convince myself that it was different. I wasn’t trying to live through him on the field or get him a contract. I thought he would be happier playing baseball if he did better and I knew he could do better. I was trying to help him stay on task and remember his steps so that he would be able to draw some enjoyment from something in his life. It was for him, not for me.

But from his perspective, his dad is yelling at him because he is doing something wrong. My son walks around apologizing for everything, anyway. I can’t help but think those things are related. Am I snapping at every little thing and making him feel in a constant state of disappointment where he feels the need to apologize all the time?

I know that that’s like. I grew up with an unhealthy expectation of perfection. I’m still struggling with it today, and I see how it limits me. I wasn’t placing expectations on my son to become a professional baseball player. I wasn’t trying to relive my youth. But I still risked ruining the game that he loves by transferring my baggage to him and, worse, watching it seep into the rest of his life, too. I desperately want to learn those lessons before it’s too late because I don’t want him to turn away from something he loves because of me. I don’t want to be “that parent” who takes the joy out of the game. Because I can’t get out of the way.

Baseball has been very good for my son. It continues to teach him how to be a part of a team. It gives him opportunities to believe in himself and work through difficult situations. It teaches him how to be a gracious winner and loser. And it shows him that he can get better at something through practice because he can see how he is better at the end of the season than he was at the beginning.

Baseball has been good for me, too. It gives me opportunities to see my son in different situations where he can fail and succeed. It shows me that he can do so much more than I think he can, and it shows me when he can’t. And it’s causing me to look inward at my issues with perfection so that I don’t make them his.

I want to do better. I think I am doing better. I hope I am doing better. Because at the end of the season, I want to see how much better I am than I was at the beginning.

June 26, 2018
Awareness Never Ends

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018. Follow along!

We sat at a large, round table in the special education classroom with half of us seated uncomfortably in child-sized plastic chairs. My wife, our advocate, and I sat on one end of the table. The district’s lawyer, psychologist and special education coordinator, the school’s principal and special education teacher, my son’s second-grade teacher, and his aide filled the remaining seats.

We were reviewing my son’s IEP that had just been approved. After two years of providing our own DIY education for our son under a makeshift 504 plan, we hired a lawyer to finally get my son a formalized education plan and the protection that it affords him. It was clear as we reviewed the supporting documentation that we needed that protection because the system is not set up for children like him. It was even more clear as we reviewed his test results that they didn’t really know my son.

They made comments about his learning without fully grasping how hard he works when he is outside their walls. They made judgments based on a few hours of testing and observation but they didn’t really understand him or what he was going through.

When the special education teacher said that she had other kids with epilepsy, I cringed. “I had another kid with epilepsy” is like saying I’ve seen one shade of blue. The spectrum of what epilepsy is to a person is as broad as the hues and tones that make up every color imaginable.

This wasn’t the first time that someone at my son’s school generalized epilepsy. The one-size-fits-all seizure plan hanging in the nurse’s office is another symptom of the lack of understanding around his condition. Sometimes, having a little knowledge and convincing yourself that you know everything about something is worse than having no knowledge at all. So we did what we always do and explained how epilepsy is different for everyone and how it affects our son specifically.

We know that won’t be the last time we need to provide that explanation because awareness never ends.

There will always be a new school year.

A new teacher.

A new aide.

A new babysitter.

A new parent.

A new doctor.

A new nurse.

A new coach.

A new team.

A new boss.

A new colleague.

A new friend.

Every time a new person comes into our lives, it is an opportunity to help them understand my son. It’s an opportunity to help them understand epilepsy from the perspective of a child and a family living it every day.

It is not always easy. It’s not easy to retell the story of how epilepsy tried to take our son. It’s not easy to describe how hard he has to work every day or to explain how epilepsy is more than just seizures. But every time we do it, we create understanding. It makes the world around my son a bit more accepting of him and his condition. And, I hope, it creates a bit more understanding in the world for other children like him.

NEXT UP: Be sure to check out the next post by Clair at http://www.epilepsybumps.com/.

TWITTER CHAT: Save the date for the #LivingWellChat on June 30 at 7PM ET.

June 22, 2018
A Different Life

There have been times when I have wondered how my family’s life would be different if my son didn’t have epilepsy. There have been times when I have wondered what it would be like even if his seizures were under control, or if he didn’t have the side effects that he does from his medications. But a television show forced me to confront a much tougher question.

I’m a big fan of the show Black Mirror, and I found a similar show on Amazon Prime called Electric Dreams, based on short stories from Phillip K. Dick. In an episode called The Commuter, the protagonist is a father who has a son prone to violent outbursts. As the story develops, the father is offered the chance for a different life, an easier life, in which his son was never born.

The Commuter, Philip K. Dick’s Electric Dreams, Amazon

As I watched the episode, I thought about turning it off. The story hit too close to home, because I’ve also thought about what my son’s future will be like if we can’t get his seizures under control. I’ve wondered what his future will be like if his emotional and behavioral issues weren’t able to be controlled. And I was ashamed that, when things were at their worst, I also wondered where my life would be if my son wasn’t born.

Even writing it down, I feel sick. I’m looking at those words and I’m not sure where to go with them. I want to spin it to be about my son because this wasn’t the life that I dreamed for him. But, while that is part of it, there is also a selfish component. When we were having to hold him to control his angry, dangerous outbursts, my thoughts went to darker places. I thought about having to do that for the rest of my life. I thought about someday having to put him in an institution or visit him in jail. I dreaded the phone call where someone on the other end tells me something that my son has done that we can’t excuse or take back. But those thoughts weren’t about what his life would look like. They were about what my life would look like.

Our life is hard sometimes. It’s also amazing, and we’re very fortunate in so many ways. But it’s also impossibly hard. It’s hard to watch my son struggle every day. It’s hard to feel like everything is always out of our control. It’s hard to keep having conversations about what to try next because everything we’ve already tried didn’t work. It’s hard to hold on to hope for a future that is different than what is in front of us. It’s hard to not let fear take over and seek out alternative paths.

But having the thought isn’t the same as wanting it to be true. If I were given the choice, I would choose this life every time. I would choose my son every time, because being his father is one of the best things about my life. Being his father has made me a better person and a better man. Being his father has opened me up in ways where I can have these impossible thoughts and come out the other side knowing that I am where I am supposed to be. And every day, when I see his face, I also know that I am where I want to be.

May 8, 2018
Lessons From The Field

The welcome arrival of Spring brings with it sunshine, warmer weather, and baseball. Last season was incredibly special for my son and our family because of the team we were on and the experiences that my son had. At a time when my son desperately needed something to hold on to and an outlet of his own, he found it in baseball.

This season, we are on a new team but there is no reason to think his experience will be any different. We’re fortunate to be reunited with coaches who knew my son from when I coached him and the coaches’ daughter in tee-ball a few years ago. When we reached out to them to give them background on my son, they already knew about him and welcomed him wholly.

Baseball has been good for my son. It provides him with an opportunity to be around other children, to have fun, and to get better at something that he enjoys. It has been good for me, too, by giving me opportunities to step back and let my son have his own experiences, his own successes and failures, and to let him figure out from those experiences who he is and who he wants to become.

Last weekend, my son had a chance to pitch for the first time. He was excited. I was terrified. My brain immediately went to what could go wrong. His throwing accuracy is not the best. I was worried that he would be embarrassed. I was worried that he would walk everyone. I was worried that he would lose the lead and that his teammates and coaches would be disappointed. I was worried that he would like it but wouldn’t be asked to do it again.

Before the inning started, I took him to the side to get him warmed up. He wasn’t great, but he wasn’t terrible. Then they called him up. As I walked him back to the field, I flooded him with instruction and advice. He threw a few more warm-up pitches with the coach and seemed to do ok, but I held my breath as the first batter came to the plate.

The thing about my son is that he likes to play the part. He’ll see a movie of a baseball player and add the drama and flourishes to what he is doing, even if it’s not appropriate for his situation. On the pitcher’s mound, he looks towards first as if he is going to pick off the runner, not understanding that in his league, the players have to stay on the bag anyway. While he is on a base, he’ll crouch way down like the player did in the Jackie Robinson movie, even though it’s not practical to run from that position. I get frustrated because I think he could do a much better job if he could just focus on the task even though many times he simply can’t. But then he also might not have as much fun.

On the mound, he threw a few strikes but a lot of balls. He walked a lot of batters and hit one. I could see him start acting instead of following his steps. I tried to get him to settle down before I realized I was likely making it worse. My frustration and anxiety were bubbling up as I watched our sizable lead shrink. The coach was finally able to put in a different pitcher and I started to think about the conversation I would have to have with my son. Should we talk about not playing the part and just focusing on doing his steps? Should we talk about how they may not ask him to pitch again? Should we talk about how he can do better?

When the inning was over, my son ran off the field with a big smile on his face. “Did you have fun?”, I asked. “That was amazing,” he said.

After the game, my son and I played catch. He threw the ball right to me every time. I asked him what was different between throwing the ball to me and pitching and he said that when he was pitching, he was nervous because everyone was watching him. I realized that I was so focused on the mechanics of pitching and trying to get him to stay out of his head that I didn’t think to check in with how he was feeling going up to the mound for the first time. I was so focused on my anxiety and my frustrations that I didn’t ask about and acknowledge his.

It’s hard. It’s hard to step back and to not be the “helicopter dad” always trying to protect him or to keep him on task. I do it with the best intentions. I want to protect him. I want to help him with the challenges his condition and the side effects of his medicine bring to his life. I felt like he needed me to do those things to function in the world, but deep down I know that it’s holding him back. He needs to be able to figure it out without me because I won’t always be here. And he needs to feel like he can do it by himself and for himself so that he develops confidence and a sense of worth. He simply can’t do that if I’m always trying to do it for him.

On the way home, I asked if he wanted to pitch again and he said “absolutely.” The coaches agreed. Because where I saw anxiety and fear and failure, they saw an amazing kid do something that he had never done before with joy in his heart and a smile on his face. They didn’t expect him to do it perfectly his first time because they know that he’ll get better with experience. They just wanted him to have fun doing it. Once I got through my own baggage, I figured out that so did I.

April 24, 2018