Tag: epilepsy

The Impossible Choice And The VNS

There are still days when I think that this is all temporary and that my son will someday outgrow his condition. The medicine, and the side effects, and the diet are all short-term measures that we are only doing until his brain sorts itself out, and then we can stop them altogether. These inconvenient years can become a distant memory.

Holding on to that fantasy is partly what made me reluctant to agree to VNS surgery for my son. Vagus nerve stimulation (VNS) is a technique used to treat epilepsy that involves implanting a pacemaker-like device that generates pulses of electricity to stimulate the vagus nerve. In theory, this stimulation can be tuned to disrupt my son’s brain’s bad habit of firing all its neurons at the same time in uncontrolled bursts, which is what causes a seizure.

There is a sliding scale of expectations with the VNS. Best case, it helps manage his seizures and we can revisit his medications and the ketogenic diet. Next best case, it helps regulate the break-through seizures he is still having. Worst case is the same worst case as every new treatment we try…nothing happens. Except, of course, for a list of new risks and side effects, both from the surgery and from the stimulation. Tingling, numbing, an altered voice, headaches, difficulty swallowing or breathing, just to name a few.

But it wasn’t just the risks that made the decision difficult. The surgery feels more permanent. They’re going to cut in to my son and insert a box with tiny wires wrapping around a nerve that leads to his brain. Once they cut him, he cannot be uncut. Even if we remove the box and wires because the seizures do go away some day or because it doesn’t work, he will have a scar to remind him of the hardships that he had to endure at such a young age. There will be no room for denial or pretending that none of this happened.

Because it is happening.

Whether we have the surgery or not, whether it works or not, this is our reality. As I struggled with my decision, another epilepsy dad told me that we should do whatever we can to help our children. Whether it works or not, if there is a chance that it can make their lives better, it’s worth it.

In the end, that has to be enough. To keep hoping for a better life and to keep trying things, even following failure after failure. Accepting the idea and agreeing to the surgery is another in a long list of impossible choices.

We scheduled the surgery, but I wake up every day wanting to call it off. To keep my son whole. Time and his condition, however, are quickly taking aware that option.

July 28, 2016
Five Seconds

They come in the early morning. Just as the sky is starting to lighten but hours before any of us want to be awake, these unwelcome visitors start as a misfiring in my son’s brain before traveling through his body and entering our world.

His seizures come like rolling waves. The first wave is long and drawn-out. It serves as the siren, alerting us . His body stiffens, his lungs slowly expel their content in a low, distinct moan. I wake up, roll over, put my hand on his chest, and tell him that it’s going to be okay.

One-one thousand.

A series of shorter waves come next. His body loosens slightly, then tenses again with a grunt. The cadence of the waves becomes steady beneath my hand.

Two-one thousand.

I sit up, rubbing the sleep from my eyes. They adjust to the dark and I can see my son’s body convulse. His eyes flutter, matching the timing of the repeating pattern of his body.

Three-one thousand

My perception of time goes awry. A few seconds have passed, but the agony that I feel acts as a multiplier and those seconds feel like forever. I have time to wonder whether these seizures will end soon or whether they will keep their tormenting hold on my little boy. There are no signs, no clues to help me predict the size of the storm. The only thing to do is to wait and to keep counting.

Four-one thousand.

The waves elongate slightly and are less intense, which gratefully means the end is near. I start to rub my son’s chest again and reassure him. I want my voice to be the first thing he hears. I want to give him a safe place to return.

Five-one thousand.

The seizures release their grasp on my son and his lungs fill violently with air as he desperately inhales. He sits up in bed, trying to get his bearings. He’s teetering between sleep and the unwanted awakening that his firing neurons have forced upon him.

I continue to watch him as the waves dissipate. Sometimes he simply turns over and falls back asleep. I like those times the best because its like he rides the waves of seizures safely back to shore. Other times, the waves crash his tiny frame in to the rocks. He cries and it breaks my heart even more.

July 14, 2016
Reality Always Wins

It’s easy to let denial take the lead. If we make it a day or a week without any seizures, it’s easy to let what is happening to my son fall to the back of my mind. There are moments when I let myself believe that we made it through it, that we figured it out and that the seizures are gone. Even if it’s just for a moment or an hour or a morning, I welcome the ignorant bliss that denial carries with it and pretend that this is not happening to my son.

The problem with denial, though, is that it doesn’t last forever.

Even without seizures, there are daily reminders that destroy the illusion. There are the pills that fill his tiny hands each morning and night that try to keep the seizures at bay. There is the diet that wreaks havoc on his body and takes away his freedom to enjoy the terribly delicious food that other kids take for granted. There are the behavior and attention issues that come with his condition and the side effects of his medication. There are the days when his balance is off, and when he falls a lot…a glance at his constantly bruised shins serve as his battle scars.

It’s hard to be in denial when you’re confronted with the effects of epilepsy and seizures every day. Ignoring these effects or simply wishing that things were different isn’t enough to keep reality from bleeding in to the fantasy. No matter how hard I try to keep it afloat, this denial bubble always bursts and sends me crashing back to earth. My shins are bruised, too, from bending over to pick him up off the ground. My heart is bruised from watching this happen to my sweet, innocent, and special boy.

The problem with denial is that it doesn’t last forever.

Reality always wins.

The problem with denial is that it doesn’t last forever. Reality always wins.

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July 7, 2016
Why Graduating Kindergarten Is A Big Deal

Last week, my son finished kindergarten.

A few years ago, I would have let that moment slip by. Honestly, moving on to first grade is pretty automatic and it would have been a normal right-of-passage, like losing a tooth. My wife would have handled the celebration, and I would have smiled and congratulated him while making snarky comments like “it’s just kindergarten” to my wife as she unsuccessfully tried to show me that every moment is important.

When that day finally came, I didn’t need my wife’s convincing. When I walked in the door after work, he ran to me and told me in a big, proud voice, “I finished kindergarten! I’m in first grade now!”. My eyes welled up with tears as I knelt to hug him and told him how proud I was of him for working so hard. “You did it, buddy”, I told him over and over as he squeezed his hug tighter and tighter.

He looked proud of himself, too. Rightfully so. He missed most of preschool due to seizures, side effects, and hospital stays. In the weeks leading up to the start of kindergarten, we weren’t even sure he would be able to go at all. His seizures were still not under control, we were still adjusting medicines, he was still adjusting to the ketogenic diet, and his behavior and attention issues were at their height. Dropping him in to a public school kindergarten with 28 other kids seemed like a terrible idea and one that could do more harm than good.

But we scrambled to get him registered, and to see what services would be available to help him. Technically, none, we learned. I felt like his epilepsy and related complications had come at an inconvenient time, too late for us to get him established as a special needs student and, therefore, not eligible for assistance. I remember thinking “Well, I’d prefer for him to not have epilepsy at all, but I’m sorry that he didn’t get out of the hospital sooner so we could fill out the paperwork.”

It was an unbelievably frustrating process, but we did get him registered and, although the special needs paperwork wasn’t completed, the principal assigned a school resource to act as an aide to my son for the few hours a day that he was physically capable of being there. Until the aide started, my wife was allowed to sit in the classroom with my son, so we had a plan for him to start kindergarten on the first day of school, although with a later start time to allow him to have enough rest to make it through the morning.

As a sign of things to come, on the first day of school, my son woke up early, dressed, at breakfast, and walked to school to start at the same time as his classmates. Of course, he had a seizure getting ready, but he didn’t let that stop him and he found the strength to push through.

He did that all year long.

When his body or mind was fatigued, when he couldn’t find words, or string together a simple sequence of events. When he couldn’t focus on a single task, or stop his body from shaking, or keep his anger and emotions under control. When he felt embarrassed about his special diet and watched the other kids eat whatever they wanted. When he missed chunks of time for therapy, or hospital visits. When he’d go home, exhausted, and sleep for hours, and then wake up and finish his homework and read and just try to keep up. Through all of that, my son woke up, almost every day, ready to put himself through it again.

My son had to work really hard to get to that day, and it was a really, really big deal.

I couldn’t be more proud.

June 30, 2016
Fatherhood And Preparing My Son For A Future With Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Today is Father’s Day.

This morning, like most weekend mornings, I’m going to wake up to the sound of my son pushing the door to our room open, the squeaky hinges announcing his arrival. I’ll open my eyes and watch him toss his green and white blankets and a few of his stuffed animals on to the bed, climb over me and lie down in between my wife and I. He’ll put his fingers in his mouth, close his eyes, and snuggle up next to us, the sound of him sucking his fingers right next to my ear keeping me from returning to sleep. I don’t mind, though. This is how most weekends go, and I wouldn’t want it any other way.

It’s in these early morning hours, as I lie awake in bed next to my family, that I sometimes think big thoughts. When I was a new father, still overwhelmed with idea of being responsible for another life in this world, I would have grand thoughts about the type of world my son would live in. Would there be enough food and water for everyone? Should I be recycling more? What about clean air? Should I get a more fuel-efficient car? Should I bike to work?

As he got older, and as I settled in on the idea that he’s more durable than I had assumed children would be, those early morning thoughts turned to more hopeful things. What number would he wear on his jersey in the NHL? How old would he be the first time he saw the earth from space? How often would they let me visit him in the White House?

For the past two years, after my son was diagnosed with epilepsy, I started asking different questions. These questions were shaped by our experiences struggling to control his seizures, managing his medicine and the ketogenic diet, and trying to normalize his life as much as possible. Would he ever be seizure free? Will he be able to live on his own one day? How can I best prepare him for the challenges ahead? How can I teach him to love himself and believe in himself against the stigma that comes with having epilepsy?

The last question is one that I’ve been thinking about more lately. He’s only in kindergarten, but there have already been incidents where he has been made to feel different because he has epilepsy. Questions about why he misses so much school and leaves early, or the snickers from classmates that come from his bizarre ketogenic lunch that sometimes includes taking a shot of oil, I can see him starting to pull away. He’ll sit by himself, or he’ll tell us he doesn’t want to bring a lunch to school. This is already happening, and he’s only in kindergarten.

The more involved I become with the epilepsy community, the more I get a glimpse of the challenges ahead for my son. I read the callous, insensitive tweets from the uninformed, misguided people who post messages about “being glad that they don’t have epilepsy” or how a video or light show “almost gave them epilepsy”. I read the messages of sadness and despair from those living with epilepsy and the stories of discrimination, and about how epilepsy “isn’t being a real thing” because there aren’t any visible signs.

There are many mornings when I’m lying next to my son and I get scared. I don’t want that world to squash the light inside the little boy who is so brave and who cares so much for those around him and who loves and who dreams incredible things. I’m worried that I am not equipped to help my son navigate that world, and that I will fail him…fail at the greatest thing that I will ever do, and that is being a dad.

On those days, when I seem to need it most, he will roll over and puts his arm around me. I instantly feel better. I remember that the most important thing I can do for my son is to love him unconditionally, which I do in abundance.

I think about that community where I have seen so much sadness and I remember the overwhelming feelings of support and hope that are much more common. They share their stories, many of whom you may read as part of this blog relay, and I, too, am hopeful and inspired to lend my voice to the choir…to sing with them the stories of what it means to be the dad of a child with epilepsy, the struggle, the joy, and the lessons that I learn along the way.

Maybe it will be this morning, when I won’t be awoken too early by the sound of a creaking door, or him sucking his fingers. Maybe I’ll feel confident that I’m doing my part by advocating for my son, and I’ll think about how far we have come, and that I’m leading with love and helping build a foundation in him that will help him face the challenges that will be ahead. Maybe this morning I will be able to fall back asleep, only to be awoken a few hours later by the four most magic words that will remind me how lucky I am and how hard I will fight.

“Happy Father’s Day, Daddy.”

NEXT UP: Be sure to check out the next post tomorrow by Whitney Petit at Changing Focus: Epilepsy Edition for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.

June 19, 2016