Tag: normal

Fewer Choices, Less Time

It feels like we are in a constant search to find a school where my son belongs.

For the first few years, we sent him to one of the city’s best public schools. They didn’t know what to do with him, so he drifted from grade to grade while we struggled to make accommodations for his stunted academic and social growth.

Last year, we moved him to a new virtual school, hoping to alleviate his anxiety that my son felt going to his previous school. While it may have achieved that goal, virtual learning amplified my son’s challenges in the classroom settling and left him further behind. Sitting in front of a computer all day on a video call with a big group of other 5th graders results in a controlled chaos that taxes my son mentally and physically in ways that I didn’t expect.

As a result, we’re once again exploring our options. But the reality is that every time we do this, we do so with fewer options and less time.

When we try a new approach, make a modification, or check out a new school that turns out to not be the right fit, we have fewer choices. The traditional classroom-based, lecture, teach-to-the test education system, which is how the vast majority of schools operate, doesn’t work for my son. He tries so hard, but his difficulty with executive functioning, processing, and retention taxes him to the point of mental and physical exhaustion. That exhaustion makes his processing and retention worse, feeding back into itself until his body and mind tap out and we are left picking up the pieces.

There are other schools, but the ones that have a different teaching method are scarce, expensive, or far away. We called them, though, and talked to the administrators. In some cases, we were told that their school wouldn’t be a good fit. In other cases, we were told that it might be a fit based on our description, but we continue to struggle to get the right amount of documentation to accurately represent where he is. But we can’t get that because we haven’t found a place with the resources or the expertise to make a recommendation for a child who doesn’t fit into a predefined box.

Now, we’re looking at 6th grade. That’s only three years until high school. Three years, and there is no guarantee, even if we find a new school this year, that it will be any different. We’re running out of time to find a place or a way to educate my son enough for him to enter the world. I used to feel like he had his whole life ahead of him, and now I just feel the pressure to find a solution before the system cuts him loose.

I had always expected that someday my son would be like everyone else. I used to believe that, with modifications, we could educate him alongside his peers who didn’t have his challenges. I used to have “normal” as the bar. It’s the same mistake that the education system makes. It’s the same mistake that the world makes.

I don’t feel that way anymore. It’s difficult to predict the future of his condition or to know what he will be capable of as he stumbles through school. We are so focused on finding a way to educate him now that we’re not thinking about college. I’m not even sure that college will be in the cards for him if we can’t find a solution that works for him in middle school and high school, and those grades went from being far out on the horizon to staring us in the face.

March 16, 2021
The Long Plateau

We are standing on a plateau.

For the past few years, my son’s condition has remained the same. He still seizes almost every day. He’s still on a handful of medication multiple times a day and the ketogenic diet. He still struggles in school and navigating relationships with his peers.

I should be grateful that he hasn’t gotten worse.

The beginning of our journey with epilepsy was the equivalent to falling off a cliff. We went from a normal childhood to fighting for his life in the matter of months. We went from school and friends to hospitals and doctors and nurses and therapists. We went from playing hockey to being toxic on medication and needing to be carried to the bathroom. Back then, I would have longed for things to stay the same.

Once he was stabilized, we spent the next few years trying to rebuild what he’d lost. Progress was agonizingly slow, especially as we discovered more pieces of him that could not be rebuilt. We stumbled every time we pretended that things were ever going to be like they were before. While we were no longer falling, the slope of ascent was so gradual that it was hard to tell if anything was getting better.

Eventually, some things did get better. There were fewer seizures, confined mostly to the early morning. He graduated from a handful of therapies. He stepped foot in school again. Some things did get better, but not back to where he was before that first seizure. And not any further.

Are we really plateauing or does it just feel that way? Are we doing everything we can to keep making progress or, like a person trying to lose weight, are we giving the appearance of doing everything but secretly skipping workouts or sneaking in extra calories? Or have we truly reached our limit of progress?

Years ago, when the direction of my son’s condition turned around, every day probably felt this way. I wondered whether things were as good as they would get, much like I’m doing now. I wondered if we were doing everything we could and whether we we doing everything right. I looked for someone to blame rather than accepting the reality of the situation. Because it’s impossible to believe that, no matter what you do, things will never be what you though they were going to be.

The longer things stay the same, the more I forget how far we’ve come. The more that “this is it” feeling takes over. The longer I sit in that feeling, the harder it is to hold on to hope for better.

And this plateau feels so long.

February 2, 2021
Happy Anniversary, Epilepsy

Four years ago this week, my son had his first seizure.

Four years.

Almost half his life.

He doesn’t remember the time before. Most days, neither do I. Our memories are of our new life that started the night his body contorted and stiffened on the floor of the arcade. It was the night that time stopped as we prayed that our son would come back to us and when I held his frozen body in a thunderstorm waiting for the ambulance to arrive.

Even though his second seizure wouldn’t be for nearly two months, the fear and uncertainty that the first one had caused lingered. It turned out that time was the quiet before the storm…that feeling you get when the clouds darken and the air changes and you know the storm is close. The air filled with the same electricity that would soon wreak havoc on my son’s developing brain.

And then it happened. The second seizure burst free just as my son sat in his seat onboard an airplane. Another thirty minutes and the plane would have been in the air but, thankfully, the crew got him safely off the plane and on his way to the children’s hospital. Within a few months, his seizures would be out of control and we’d be back in the same hospital learning firsthand what status epilepticus was.

It would take nearly two years before my son was stable. But even then, we were still adjusting medication, dealing with side effects and behavioral issues, and occasionally using his rescue medication. He was stable, but not living the life we had planned. But by then we were beginning to realize that we needed a new plan.

Four years in, we’re still adjusting that plan. There hasn’t been a day that has not been affected by epilepsy. He’s had countless seizures. He’s been on and off medications and suffered endless side effects. He’s had a barrage of blood draws, EEGs, and other testing and had a myriad of therapies trying to restore what epilepsy had taken away. He’s been isolated from his peers and falling more behind in a world that doesn’t wait for people who can’t keep up, or are different, or need help.

After four years, I thought we’d be further along. I hoped he would outgrow his seizures or we’d at least have them under control. I thought we would have figured it all out. I thought we’d be able to get back to normal. But, instead, we had to change our definition of “normal” and learn how to live life with different expectations.

In these four years, I’ve learned a lot of other things, too. I think I am a better man, husband, and father than I was before this started. And we’ve had so many wonderful experiences and met some amazing people on our journey. But I can’t bring myself to be grateful. I can’t allow myself to acknowledge the things that are good because I don’t want to reward the monster that continues to attack my son. Our life is what it is in spite of epilepsy, not because of it.

Four years is a long time. But I know we have many years to go. We didn’t ask for this, and we don’t want it. But it looks like we’re going to be together for a while.

So, Happy Anniversary, Epilepsy.

I didn’t get you anything.

Because I hate you.

July 17, 2018
Celebrate Things Big And Small

Last week, we were visiting my parents in Florida. My wife and son were in the bathroom getting ready for bed when I heard my wife’s voice start to go up in a combination of nervousness and excitement before she let out a huge cheer. My son came running from the bathroom, mouth dripping with blood exclaiming “I lost my first tooth!” My wife followed, beaming, with the tooth wrapped up in tissue paper.

I stood up and gave him a big hug. Grandma and Grandpa came in to the room and congratulated him, and we all set about making the necessary preparations for the long anticipated tradition. Grandma brought in an envelope, which my son addressed to the Tooth Fairy (with love) and slid his tiny tooth inside. He finished getting cleaned up and rushed in to bed, eager to fall asleep so that he could wake up to see the bounty that the Tooth Fairy had traded for his precious pearly white.

During the last year, my son has dealt with so many obstacles that most kids will never deal with, but that night he experienced something that most kids get to experience. There was no cloud of epilepsy hovering over the event, no addition of the disclaiming phrase “because he has epilepsy” that sometimes accompanies other milestones. There was just a kid, my son, mouth bloodied with his tooth in an envelope, excited about the Tooth Fairy.

A few weeks before our trip, there was another rite of passage when my son rode his bike for the first time without training wheels. A great achievement, for sure, but amplified by the knowledge that there was a period in February when he couldn’t walk or talk, followed by months of severe ataxia where he would shake and wobble and fall. Those first ten feet of training wheel-less peddling reminded me of my agile two-year old boy zipping around our neighborhood on his balance bike, long before we had any knowledge of seizures and epilepsy and ataxia. My wife and I cheered for him as he traversed the park, found his balance, learned how to stop, and looped around trees. A couple near us that was watching him commented at how amazed they were that it was his first time. To them, he was just a normal boy out doing normal boy things. If they only knew. But for a few moments, we felt exactly the same way.

There will be many challenges in my son’s life, some because of his epilepsy, some not. There will be times when even good moments will have attached to them a caveat about his condition. It’s hard, very hard, to be present in those moments and not think about the past before any of this happened, or the future and its possible limitations. But it is my responsibility and my privilege to be present, to let my son know that I am there for and with him, and to celebrate all things, big and small.

September 5, 2015
One Year Of Seizures

This week marks the one year anniversary of my son’s first seizure. It’s not an anniversary that we are celebrating, obviously. But it has been long enough now that it’s hard to remember a time before seizures, but when I do…when I see a picture from the “before time”, when I talk to someone who hasn’t seen him since he started having seizures…it’s hard to make the connection between then and now.

His seizures started around the same time we moved from Colorado to Pennsylvania. The geographic difference makes it seem as if it was a different family back in Colorado. Their son didn’t have any seizures. The family in Pennsylvania, their son has seizures that are still not under control. The Colorado family was hockey and balance bikes. The Pennsylvania family’s son struggles to find his balance at all some days. The Colorado family had an infinite number of possible futures. The Pennsylvania family is mostly trying to manage day by day.

Most of the pictures of the Colorado family are gone from the shelves. They were too hard to look at. We didn’t see our son in those pictures, we saw another child living another life. After a year, that other life stopped being our present and started to become our past. This is our life now.

After a year, though, we’re slowly making new memories and celebrating new victories with new pictures that are making their ways in to frames and on to the empty shelves. This is our life now, and we’re finding ways to live it. We’re getting more help for him and for ourselves. We’re starting to go out to dinner, both as a family and on dates. We’re finding friends. We’re playing teeball. We’re going swimming. We’re going roller skating. We’re exploring our new home and making the days that we have count.

For all the differences…for how unconnected and disjointed that the two families seem to be, they do have one thing in common. The Colorado family had a tough kid that wouldn’t quit and that, somehow, kept a heart full of love through really difficult times. He lived fearlessly.

The Pennsylvania family’s kid is the same way.

July 17, 2015