A Childhood In The Clouds

I wonder how my son is going to remember his childhood. Sometimes, I wonder if he is going to remember it.

My son and I watched a Philadelphia Eagles game and we saw a player that my son had met at the hospital. I asked if he remembered meeting him and he said that he didn’t. We met the player almost two years, so at first, I chalked it up to my son being too young to remember. But he was also in the hospital because he was having more seizures and because we needed to adjust his medication.

Like other medicines, epilepsy medications have a long list of side effects. But medicine that controls seizures targets the source of those seizures, the brain. As a result, the side effects show up in those areas that the brain controls, which is everywhere. We have sees these side effects alter his mood and behavior and impact his motor control. As he gets older, we’re also seeing how much they affect his ability to learn and his memory. Those side effects were likely there all along, hidden beneath the surface. But now that those skills are being tested, the latent effects are being revealed.

We’ve passed the three year mark of my son taking medicine for his seizures. Three years of my son’s brain in a constant fog. Three years of struggling to form solid shapes around thoughts and ideas. Three years of a childhood spent in the clouds.

Three years of exerting all his energy to focus on one task at a time. Three years of that focus sapping all his energy. Three years of wondering if there is enough energy or will left inside of him to enjoy an experience.

The more we explore, the more gaps we find. Milestone events never happened. People erased from existence. It’s impossible to tell whether the failure is storing the memory or recalling it. The result is the same, though. A void where a childhood should be.

My wife and I repeat stories of our adventures to him, and we show him the albums of pictures we’ve taken. I’m hoping by continuing to expose him to those memories that he will have something to remember. I don’t know if it will be because we’re unlocking old memories or creating new ones through our stories. I’m hoping his brain doesn’t know the difference. I’m hoping that when he looks back on this time in his life, he’ll have something to find.

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.

 

Little Bricks And Shaky Hands

When I was young, I loved playing with Legos. At my grandparents’ house, my favorite toy was a box of loose bricks. I would turn them into houses, or animals, or fighter jets. I remember “upgrading” to the more advanced Technic set when I was about ten. It felt like a right of passage. You’re born, learn to walk and talk, play with kid Legos, then hit that milestone of playing with Technic. From there, it’s all downhill and the only things left are to do are learn to drive, marry, have kids and, finally, die.

My son has developed his own affinity for the little plastic toys. Late last year, he needed less of my help to assemble the kits. It’s one of those moments that both made me proud for his accomplishments and sad for my loss of usefulness. Now, he is putting more complicated sets together mostly by himself. He’ll spend hours working through the instructions until he reveals his masterpiece.

Sometimes he’ll still ask for help with some of the smaller bricks because he has a hard time taking them apart. When I go to him, I see his little fingers struggle to grasp the tiny pieces. Especially when he is tired, his ataxia is more noticeable. His hands shake and make tasks that need fine motor control almost impossible. On his face, you can see the attention he is trying to give to his efforts. But his body’s instability wins out over his mind.

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It’s frustrating and sad to watch. Compared to the occasional seizure or handful of pills he takes twice a day, the shakes are always there. They’re visible playing with Legos, trying to use a fork, and coloring and writing. They make learning new tasks difficult and they make playtime harder than it should be. I can’t imagine the mask he wears and how frustrated he feels inside when he tells me “I’m just a little shaky.”

Those words cut through me. I can’t fix it. It’s hard to watch him struggle. These are some of the same activities he works on in therapy and the more he does them, the better he will get at them. But many of these tasks will never be easy for him. It’s hard to watch my son have a hard time with such basic tasks like using a fork. It’s hard to let him struggle through and not do something for him or let him take a shortcut and eat with his hands.

I want to encourage that mindset of pushing through because I hope it will get better. He already has such determination and I want him to keep it. Even when it’s hard. Even when it’s unfair. Even when there are easier options. Why? Because that’s what is going to help him survive and succeed with the challenges he has ahead of him. My job as his father is to prepare him for what is ahead. Even if it means watching him struggle and shake. But I also want him to know that I am there for him should it get too hard. I want him to know that he is not alone.

I’m struggling to find the right balance between helping and letting him keep trying. When is it helping and when is it cruel? It’s cruel what this disease has done to him. I worry that I’m being cruel too when I watch him suffer its effects when I could step in to help.

How much of this is me hoping he’ll struggle through it and that there will be another side? What if there is no other side? What if it gets worse? What does that mean for when my wife and I are gone? I try to focus on the positive progress he has made since his condition was worse. But it’s hard to do when I’m looking at my child struggle because of his condition. The thought of this being the rest of his life is too much to think about with a seven-year-old.

And there aren’t any answers, at least for now. His condition changes, his medicine changes, his body will continue to change. I try to remind myself to take each day as it comes and to take my son wherever he is that day. Doing that is one of the hardest things I have ever had to do in my life. But when I can do it, I see a little boy smiling as he creates something out of bricks. I see that sense of accomplishment on his face when he shows us what he made. And sometimes, I think things are going to work out okay.

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