June 2016 - Epilepsy Dad

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.

EFEPA Walk for Epilepsy – Thank You

This week, I wanted to simply thank everyone that supported our team for the Epilepsy Foundation Eastern Pennsylvania’s Walk for Epilepsy. Not only did we receive donations from our loving family and friends, we received contributions from people who have never met my son and only heard stories about our journey. We also had a larger team participating in the walk this year, with our friends joining us in supporting the cause.

epilepsy dad efepa walk for epilepsy — Team “Epilepsy Dad” – EFEPA Walk for Epilepsy

I am truly humbled by the show of support that my son has received and to, in turn, be able to support an organization that has welcomed us and provided us with guidance and encouragement.

If you would like more information about epilepsy or would like to learn how you can help, visit the Epilepsy Foundation Eastern Pennsylvania’s website at http://www.efepa.org/.

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.