meds Archives - Page 4 of 11

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.

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.

Early Mornings And Coffee Spoons

It’s still dark outside, but I’m at my usual station, too early in the morning, writing. My son had a short seizure that woke me up. My wheels started turning and I couldn’t turn them off. The upside of him sleeping in our bed is that I don’t have to lose sleep wondering if the monitor is working. The downside is that his seizures are right in front of me, and its impossible to go back to sleep once they are over.

At some point, he isn’t going to be able to sleep with us. He’ll be too old and too big to fit in our bed. If there were ever a reason to wish him to remain seven forever, that might be near the top of my list. Coming in a close second is the fear that his condition is going to get worse as he gets older. Our doctor is concerned about what happens at puberty. It’s another stage of brain development where seizures can change or be more severe. I thought it was impossible for things to get worse. Apparently, they can.

Today, he’s only had epilepsy for a fraction of his existence, but by then, he’ll have had epilepsy for most of his life. We’ll long have lost count of seizures, and meds, and have long forgotten about the time before this began. It will be all we know and all he can remember.

This is what happens to my unrested brain so early in the morning. It gets pulled into the stream and dragged wherever the current takes it, and there is no safe shore for my thoughts to land. The present is filled with seizures, medicine, side effects, and, presently, a lack of sleep. The future has too much uncertainty, doubt, and fear. The past is too painful. Remembering a time without epilepsy is getting harder and, if I try, it makes me sad. What we saw for our lives back then was not this life.

My coffee sitting on the window sill does little to pull my unrested brain back to happier thoughts. But as I stare out onto the dark street, I can at least resist the urge to measure our lives with coffee spoons, in careful doses or as an observer. There is so much left to our journey, so much active living to do and so much of it is unknown that dwelling in any one place is fruitless toil.

Instead of focusing on a when, I try to focus on my what. My what is my family that is together and, in many ways, stronger than ever. Most days are hard, but there is always something to be grateful for. We have a nightly routine where we call out something that we’re grateful for from our day. Even if we skip the rest of our routine, that one gets done. Because those things for which I am grateful are worth measuring, and I want to focus on adding as many of them as I can to this life.

On that note, I’m going to sneak back into bed and lay next to my family. I’m going to do everything that I can to settle my mind and be present in that feeling of being together.

And, maybe, I’ll actually sleep.

It Looks Like Rain

When my son was at his worst, with relentless seizures and medicine flooding his body, he wasn’t our boy. He was uncontrollable and so, so angry. He would have fits for hours where he would try to hurt us and say terrible things. We’d spend those hours holding him, telling him that we love him, and waiting for the storm to pass.

There were long stretches of weeks where we would only see glimmers of the boy that he was, like a break in the clouds. But, inevitably, the clouds would expand, find each other, and hide the light behind them.

After too many months, the enormous storm that ravaged our lives started to break up. The seizures were more under control and we were able to reduce his medications to only a handful. We sought counseling for dealing with his condition and with each other. With a lot of hard work, we had more breaks in the clouds, more times where we saw the light from our boy shining on our lives.

We spent a lot of time basking in that light. We were starved for it after so much time without it. There were still rumbles in the distance, a seizure or an outburst, that made the hair on our necks stand up. Occasionally, a storm would pop up, but it was usually brief and not as violent. Still, we remained on guard.

Lately, the sound of thunder is getting louder.The hairs on my neck are standing up again. We’re seeing the tell-tale signs of a storm. There are times when he can’t control his body or regulate his emotions. There are days when he’s not there and when he’s not processing and not aware. There are more times when he gets angry and pushes everyone away. We’re adjusting his medicine again and these signs act as our barometer that tells us when the dose is too high.

I know we have to adjust his medicine to keep the seizures in check, but I also know what that brings with it. I can see the clouds forming. It looks like rain.