Category: lifestyle

Ignoring The Warnings

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

When I was younger, my vision of my future included many things. It included a cabin in Maine where I would write and take my sea kayak out to harvest lobsters from my traps. It included a job where I made a lot of money doing something that I loved. It included traveling around the world, soaking up the sights and flavors of every culture on the planet. And it included a family that would share in these experiences and would enrich my life with their own experiences and dreams.

Man plans, God laughs. ~Yiddish proverb

That vision for my future didn’t include a lot of things. It didn’t include the pressure and demands of a job later in my career. It didn’t include the realities that come with having parents who are aging. And it didn’t include the curveball we were thrown when our son was diagnosed with epilepsy.

The combination of these factors created an environment that tests us every day. The relentless seizures. The widening gap between our son and his peers. The insecurity of our lives. The distance that the exhaustion and pressure create between us.

There was a movie called “The Perfect Storm” that detailed the account of the Andrea Gail caught at sea during the 1991 “Perfect Storm”, where multiple storms merged to create a super-storm. The crew ignored the warnings about the storm and made choices that took them further from safety. Eventually, underestimating the power of the storm, they turn back into it and the ship is lost.

Lately, I’ve been feeling like we’re caught in our own storm. I’ve been ignoring the signs and now we’re trapped in the middle of it and the waves are getting bigger. Occasionally, one of us will get thrown overboard but the others pull them back to safety. But there is only so long we can hold out. Eventually, we will get tired. Eventually, the ship will be lost.

I underestimated the strength of this storm. I thought we were lucky. I thought the seas would calm. I thought we had been through enough. But the storm is not done with us yet.

The warnings are in front of us.

It’s time to steer our ship to safety before it’s too late.

NEXT UP: Be sure to check out the next post by Elaine at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

A Movie Script Ending

Our journey with epilepsy has the makings of a movie.

It has the time before. The time before epilepsy. The time before seizures. The time before medication, and side effects, and surgery.

It has the inciting event. The first seizure in the lobby of the arcade. The second seizure onboard an airplane. The “ticks” that turned out to be seizures that snowballed into status epilepticus and months in the hospital. The days when my son couldn’t talk or move. The night when my son was surrounded by a team of doctors trying to save his life.

It has an enemy and its name is Epilepsy.

It has the struggle. Every day. Early morning seizures. Exhaustion. Navigating the world in a fog. Trying to keep up. Learning. Behavior. Therapy. Rebuilding.

But it doesn’t have an ending. In the movies, the hero faces challenges, defeats the enemy, and returns home victorious and transformed. But we’re still on the journey and there isn’t a clear path home. Our enemy is one that he could face for a lifetime.

I started this post years ago. It sat unfinished, but I had an idea of how I would end it.

Compassionate people reassure us and say some children grow out of their seizures. We smile and nod, but its like they are watching from the seats in the theater but we’ve seen the script. We know what’s going to happen next but don’t want to reveal any spoilers. If they knew the ending, this isn’t a film that most people are going to hang around to see. Because people love a happy ending.

I wrote that at a time when things were exceedingly hard and relationships with the people around us were being tested. Some of those people are no longer in our lives. But, in spite of how I felt it was going to play out at the time, some people stayed. We’ve gone from feeling as if we were always going to be alone to cherishing what we have. Who we have.

It is true that our story may not have an ending, but it does have one more thing. The journey revealed many lessons about ourselves and the people around us. It showed us who is in our corner. The struggle forged stronger bonds. The journey has given us allies and surrounded us by our village. Our people. Our family. And we draw so much strength from knowing that we are not on this journey alone.

“There are no words to express the abyss between isolation and having one ally. It may be conceded to the mathematician that four is twice two. But two is not twice one; two is two thousand times one.” ~GK Chesterton

The Sleepover

A few weeks ago, my wife and I spent our first night away together since my son was born. Individually, we’ve been away. I’ve gone on work trips, and my wife has gone to visit family. But we’ve never both been gone for the night and let someone else watch our son.

In some ways, it wasn’t practical. We don’t have family that lives near us, so leaving him at grandma’s house wasn’t an option. But there is also the reality that our son has seizures almost every night. Spending the night isn’t just about giving him a place to sleep. It’s an active task that involves monitoring him and responding to seizures.

Our son is never alone. Even sleeping in his bed, we have a camera pointing at him that I watch all night long. When he is in his room playing, we keep a cautious ear listening to what is going on. He receives individual attention at school, and his nanny is substituting for us when we aren’t there.

That level of involvement is not something that transfers well to someone unaccustomed to that level of care. It’s not something that lends itself to people lining up to take on the responsibility. It’s our every day, but it’s not theirs. I can imagine the conversation with the parents would go something like this:

As you know, our son has epilepsy. And it’s very likely that he’s going to have a seizure really early in the morning. Probably more than one. The seizures are likely going to wake and frighten your child. And you’ll need to help my son reorient to the world as he comes out of it and make sure he doesn’t fall out of the bed or try to walk around and fall down your stairs.

[silence]

If the seizure lasts too long, his rescue medicine is in his overnight bag. The good news is that we haven’t had to use it in a while. The bad news is the delivery mechanism.

[silence]

Also, you’ll need to make sure he doesn’t eat or drink anything we don’t send with him. He’s on a medical diet and if he eats anything else he could start having seizures.

[silence]

Oh, and don’t let him stay up too late. The more tired he is, the more likely his is to have seizures.

[silence]

His medicine is also in his bag. Make sure he takes all of his pills because if he misses any…you guessed it, more seizures.

[silence]

Other than that and, I guess, his depression and behavioral side effects of his medicine, I think you’re all set. Ok, goodnight!

[overwhelming silence]

I couldn’t burden someone with that responsibility because nothing could prepare them in one night for what has taken us years to adapt to. But I would also spend the night worrying and wondering. It wouldn’t have been a good night for anyone involved.

I really struggle with the idea that no one else can or will want to take care of our son. But at the same time, I find reasons why no one else should. They don’t know my son. We can’t prepare them for what it is like. What if something happened?

In the end, our nanny provided the perfect opportunity. She has been working with our son for over a year. She’s seen his seizures during his nap, and she’s helped him manage his behavior and emotions. We trust her to keep him safe. When she agreed to an overnight stay, it felt right.

Even though it was only one night, it opened my eyes to a new possibility. I’m not going to say that I still didn’t worry or wonder. But coming from a place where I didn’t think it would be possible at all, that first night was huge. It may not have addressed all my fears about the future, but it was a good first step.