Tag: fatherhood

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
A Moment Of Lucidity

I came home and everyone was sitting at the kitchen table. The topic of conversation was about how good a day my son had. A smile flashed across my face. We haven’t had a lot of those lately, and this sounded like a really good day.

My wife made a strong case for possibly his best day in months as she described what had happened. She told me that his aide at work commented about him being his old self. My son jumped in, adding emphasis to his trip to the library and the Lego club he discovered there. The energy in the house was amazing, and we held on to it all evening.

Over the past few months, we’ve been adjusting my son’s medications. It is a hard time for everyone as we try to manage the seizures and side effects that always follow. Insomnia, fatigue, and emotional and behavioral issues disrupt everything about his life. I saw the turmoil inside of him taking a toll, and his bouts of sadness shred my heart to pieces. I was so happy for him to get a win.

It wasn’t until we started to get ready for bed that we noticed that he didn’t get his morning medication. In the 1,128 days that we’ve been giving him medication for his seizures, this is only the third time that we screwed up. In the past, if we get off-schedule for his dosing, we saw signs that raised an alarm. He might have a seizure during the day or more during his nap. But this time, there were no signs like that. Only a really good day.

We scrambled to get him back on track, but the inevitable happened. He had more seizures that night than he has had in while. The next day, his behavior was erratic and it took most of the day to get him settled down. Over the course of the next couple of days, both his seizures and his behavior started to level off.

Before we knew about the missed medications, we thought that we had cracked the code. His head has been swimming in medication for so long but we continue to look for the right mix. We lower the dosage on ones that put him in the haze and increase the dosage on ones that help his seizures. We thought that with this latest combination we found that balance.

But instead of a solution, what we spotted was an anomaly. A single, dangerous moment of lucidity. I picture him suspended in a sea of medication. It slows his movements, makes it hard to think and to see and to be himself. That day, he was finally able to reach the surface. He was able to take one big breath and see the world around him. We could see him, too, as his head broke into the open air. Then we watched as he was slowly pulled back under.

Was this a glimpse of the boy behind the seizures and the medicine and the side effects? Is he gone again? Lost beneath the surface of his condition? Or was it a coincidence? He has had some pretty good days before. Are we are trending in the right direction and that really good day was a sign of things to come?

The answer to those questions is the same frustrating answer it always is. Wait and see. It’s the same answer when we change medications. It’s the same answer when we start a new treatment or therapy. Everything is so unpredictable that we just have to wait and see. But this time, the stakes seem higher because we’re trying to figure out if what we saw was our son or a mirage.

Deep down, I know what the answer is. The reality is that it was my son. But it is him on the other days, too. He is whoever he is in front of us on any given day. That’s the reality of his condition. The good and the bad. The sweet, gentle boy and the sad, angry boy. The lucid and the drugged. The boy who can face any challenge and the boy who wants to hide and be alone.

Sometimes, I get so wrapped up in the differences between the two that I wind up chasing the mirage. I focus on the way things should be because I want his life to be easier. To be better. But when I do that, I leave my son behind. I miss out on the gifts that we are given instead of simply being grateful that my son is here and that he had a really, really good day.

January 16, 2018
An Uphill Battle

A few weeks ago, my son’s science teacher e-mailed a video to the parents of his class. In the video, the students were blowing through straws to move a paper ball around the table to show the power of air. The camera panned across the room showing groups of kids performing their experiment.

I watched the video, eager to see my son. When his table finally came in to view, I could see his classmates doing the experiment. But my son was off his chair, standing and facing the wrong direction. The camera caught his aide helping him turn around and back into his seat before it moved on to the next table. I didn’t see it, but I am sure he said he was sorry to his aide and then tried again. Because that’s what he always does.

My son is always surrounded by people who are there to help him. Whether it’s because of ADHD or side effects of his medication, he struggles to regulate his attention and emotions. The excitement of his crowded classroom is too much. Being left alone is too much. Trying to sequence events or remember the steps to a math problem is too much. Everything we ask him to do is a slippery slope down a path where someone has to be there to catch him.

The worst part is that he seems to be more aware of it as he gets older. The look on his face when his aide guided him back into his chair was one of realization. He knew that he wasn’t doing what he should be doing. We see that look a lot…like he’s disappointing the world around him as much as he’s disappointing himself. He walks around apologizing all the time, and it breaks my heart.

I can’t imagine what that is like for him. Always being watched. Constantly being told that whatever you’re doing is something you shouldn’t be doing. And feeling like it’s out of your control.

This isn’t one of those posts where I have an answer. We’re getting help for him and as a family to try to figure it out. We’re surrounding ourselves with people who will help him succeed. We are trying to help him build confidence and treat his condition as a condition and not a reflection of his value as a human being. We’re trying to boost his confidence and find ways to make him feel as special as he is. Having to do that for my son is hard and it makes me sad. It’s an uphill battle. But I would do it all day, every day, if that is what he needed.

Because there is nothing more important.

December 19, 2017
To Be A Kid

We’ve seen many ups and downs over the last few weeks. An increase of dosage for one of my son’s new medications brought back unwelcome side effects. His seizures are only slightly more under control than they were before, but he’s exhausted and has a hard time sleeping through the night. His mood and behavior have been bouncing around from stable and happy to angry and defiant.

When it’s at it’s worst, little incidents explode into big ones. The escalation is so fast that it’s jarring and catches us off-guard. It’s so fast and the situation is so frustrating that we don’t always respond in the best way. Then we find ourselves in the middle of the tornado. He’ll say mean things. He tells us he wants us to throw everything away and that he deserves it. I can sense the shame and guilt swell inside and overwhelm him. We hold him and tell him that we love him and wait for the storm to pass. When it does, there are usually tears and remorse and regret. As a father, these moments rip me apart.

These side effects are cruel, especially for someone his age. Between the side effects, the diet, the appointments, and the seizures, he has little time to be a kid. There aren’t many chances for him to be free, to make a mess, and to not have the complications of his life burden him. There aren’t many chances for us to let our guard down, either. We’re always on the edge worrying about him, trying to keep him safe and regulate these side effects. We’re as confined as he is.

But, sometimes, we find opportunities where we can all have fun and enjoy the moment. My son loves dressing up as Captain America, so my wife planned a Super Hero Scavenger Hunt for his birthday. He and his friends had to chase down the evil villain the Snake Robber, the role that I was taking on. The idea of running through the streets with a mask and stuffed snake around my neck made me anxious. I’m a shy, quiet, reserved individual that follows rules and avoids chaos. But I went into it with an open mind and the singular thought that it would make my son (and wife) happy.

I made my way to the location where the superhero party would encounter me for the first time. I waited nervously on a bench in the park while curious onlookers moved further away. Across the park, I saw one of the kids spot me and point in my direction. Then, they charged. Within a minute, they had covered me with Silly String and laughter. My son had a huge smile on his face as he and his friends chased me around the park. Then I used my freeze ray to, well, freeze them and escape to the next location.

I had a huge smile of my own on my face as I ran to set up the next battle. This time, the kids trapped me until I told them that I hid a dozen of their teddy bear friends in the park. While they looked for them, I escaped again. Eventually, they caught up with me and saw me entering my lair to assemble a machine to steal their powers.

In the final battle, the superheroes found me near the pool assembling my machine. I froze all the heroes again except for Captain America who used his shield to deflect the ray. He advanced on me while his friends watched and defeated me by pushing me into the pool.

As I laid in the pool, I looked up to see my son with the biggest smile on his face and his arms raised in victory. Behind us, I could hear his friends screaming and cheering him for him. Captain America had saved the day. At that moment, there were no side effects. No appointments. No seizures. There was just my son being happy. And being a kid.

November 14, 2017
Early Morning

Lying in bed, I opened my eyes in the early morning and stared at the ceiling. My son’s arm was draped across my chest and his head rested on my shoulder. Ahead of our move, he’s been sleeping with us. The chaos of our lives and the distance to his room has become increasingly problematic. Until we move into our new place, it’s a concession we made so that we can all be together and so we can monitor his seizures.

I brought my free hand up and rubbed his head. Usually, my wife is the recipient of his slumbery affections. I get the other end with a face-full of feet as he turns horizontally on the bed. But not that morning. That morning, I looked down to see my the beautiful face of my boy sleeping peacefully. I remember smiling as I made minor adjustments to my position and was once again comfortable. I closed my eyes, my hand still rubbing his head, and enjoyed the moment.

It’s in these early morning hours that I’ll catch my son talking in his sleep. Sometimes the words are decipherable. He has had unconscious conversations about baseball and hockey. Once he talked about his iPad, which I’m pretty sure is a sign that we let him use it too much. Other times, his voice is too low or the words are too jumbled but it’s still clear that he’s having a conversation.

Sometimes, his hands or legs will twitch. It’s like watching a dog dream of running and watching its limbs move in response. We had a cat once that would dream of drinking and we would watch him lap at the air as we laughed quietly so as not to wake him. It’s impossible to tell what activity my son was trying to do in his sleep, but it still made me smile. Dreaming at seven looks very different from dreaming at forty.

That morning, though, a different and unfortunately familiar sequence began. It started with a tensing of his muscles. As he laid at my side, I could feel his body start to stiffen and elongate. I adjusted my position to give his body room the room it needed. The room went quiet. The only sound was me telling him that everything was going to be okay as I kept my hand on his head.

At its apex, his body is rigid and long like a piece of wood. His body continued to squeeze, forcing the air from his lungs. The audible moan also started as his body expelled air past his vocal chords and out his mouth. His body relaxed before tensing up again, the rhythmic jerking of a myoclonic seizure. Every pulse of his body made me feel more and more helpless, but there was nothing to do but wait it out. So in the early morning darkness, that’s what I did.

A few seconds more and the seizure was over, but the postictal state began. Like he usually does, my son sat up, smacking his lips and looking at the world through squinted eyes. I continued to console him and let him know what he was safe until he gathered enough of his faculty to know where he was. Then I helped him lay back down and get comfortable. I draped his warm, green blanket over his shoulders and pulled it down to cover his feet. He put his two fingers that he likes to suck on in his mouth, closed his eyes and drifted back to sleep.

I could not go back to sleep. I struggled to not have my thoughts drift to all the negative possibilities. I should have gotten up to distract myself but I wanted to be near him in case he had another seizure. So, instead, I listened to his breathing and returned my gaze to the ceiling.

September 12, 2017