change Archives - Page 2 of 3

The More Things Stay The Same

The only thing that is constant is change. ~Heraclitus of Ephesus

In many ways, our life is constantly changing. We meet new people and have new experiences. There are new projects at work. The changing season is bringing cooler temperatures and color to the trees. Things look different than they did a few months ago.

My son started third grade and has a new teacher, a new aide, and is meeting new kids in his class. He’s in a different place than he was this time last year. He’s a year older. He’s on different medications with different benefits and side effects.

The more things change, the more they stay the same. ~Jean-Baptiste Alphonse Karr

But even with so many things changing, the world looks very much the same.

In spite of the new medications, my son is still seizing. He still labors physically and mentally through the impact of those seizures and the many medications he takes to try to control them.

In spite of the new grade, teacher and aide, the school is still not set up for him to succeed. He still cannot physically or mentally make it through the day. We’re having to explain and defend ourselves again this year, just like we do every year.

In many ways, my son’s life changes so much that it’s unpredictable. But after a while, even that becomes expected. It becomes the same. A change for us would be stability. A change for us would be knowing what to expect from one moment to the next.

But there is no way to control what that looks like. We could find ourselves stuck at the bottom instead of at the top. He could always be seizing. He could always be at the mercy of the cruel side effects of the medicine that keeps his brain from losing control. So, at least for today, I welcome change. Because, as long as things keep changing, there is always hope that things will change for the better.

In The Moment

I remember a few months ago sitting on the floor holding my son who was in the middle of an angry tantrum. I don’t recall what set it off but he had clearly lost control. His eyes were glazed over and he was saying hurtful, mean things while trying to hit me. It was an all too familiar Jekyll and Hyde moment when my son became someone else.

I sat there, holding him, and tried to not get hurt or become angry by what he was saying and doing. I remember thinking “This is our life now.” Things were never going to change. Things were never going to get better. For the rest of my life, I would need to be there to shield the world from my son.

Even when this episode passed, I felt like I would only be waiting for the next one. And there was a next one. And another after that. But with each of those episodes, I began to notice the moments in between. Those moments when we weren’t on high alert. The moments when we might have looked like a normal family. I tried to let myself believe those moments would become our new normal, but that didn’t happen, either.

My mistake was treating these highs and lows and my feelings and reactions to them as a permanent thing. When I was sitting on the floor holding my son, those fears and emotions were very real and very consuming. They were all I could see. When we were happy and hopeful, I held on to those feelings tightly. They were all I wanted to see. But in both cases, the moments passed. Those feelings fell into the stream of time and it carried them away.

The current of the stream is strong and unbiased. It takes away the good and the bad. When it takes away the good, it’s always faster than I want it to. Those precious moments sometimes disappear before I can appreciate them. When it takes away the bad, it’s never fast enough. The pain and heartache seem to consume me and linger longer than I think I can endure.

I’ve tried to control the stream. I’ve tried to hold on to those good moments longer by slowing the flow. But I wind up focusing too hard on not letting go that I wind up not being present. While I struggle to hold on to that one moment, others are floating by without notice.

I’ve tried to push away the bad moments. But the more attention I give them, the more they seem to stay with me. Instead of being pulled away by the current, they bob up and down in front of me, creating a compounding log jam of moments behind them.

The hardest thing to do is to give up trying to control every moment and, instead, to be in the moment. To be aware of how the moment affects me and my reaction to it. To be present in each moment and to take what the moment offers but then to let it go.

Wherever We Go, There They Are

Whenever we go to a new place, in the back of my mind I want that place to change my life. It seems like a tall order, which may be why it hasn’t happened yet. I want to go to a place and be so inspired that I start writing that book that I’ve been thinking about. I want to leave a place a better person, having a better relationship with the people in my life. But mostly, I want to go to a place where my son doesn’t have any seizures.

My son didn’t show any signs of having epilepsy until we moved to Philadelphia. I was only partially joking with the doctors when I asked them if it could be Philly causing his seizures. The first time we went back to Colorado, I was ready to move back if he was seizure-free during the trip. But he wasn’t. I had the same thought when we visited Florida. Maybe Colorado was at too high of an elevation and he needed an ocean breeze. But he had seizures in Florida, too. And in New York. And in California. Wherever we went, there they were.

Even so, when I stepped off the plane in Hawaii, I had that same thought. That maybe this was going to be the place where my son would be seizure-free. If it was going to be any place, Hawaii wouldn’t be terrible. Before we even picked up our bags, I convinced myself we could make it work. I could find a job, even if it meant working remotely. I was sure the children’s hospitals would be fine, and we could make regular trips back to the mainland for care. But we wouldn’t need to, because he wouldn’t be having seizures. It was the perfect plan. Until it wasn’t.

In our first early morning in paradise, the sound worse than every other sound filled the hotel room. His seizures had found us. Across the continent, across the ocean, to an island in the middle of the Pacific. In a place we’ve never been before, hidden from the world. Wherever we go, there they are.

In a way, I was grateful that the seizure came quickly because it lifted the pressure that I had put on our vacation. The longer I carry that pressure, the less present I am and the more I miss of our life. But instead of worrying about that seizure around the corner, it had already come.

It was freeing.

It allowed me to focus on having an amazing vacation with my family in spite of our stowaway. It allowed me to be present and to be grateful for the moments that we have. I saw the beauty of the island. I saw the smile on my son’s face. It reminded me that it’s not a destination that is going to change my life. It’s that feeling that I get when I see his smile that makes my life better every day.