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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.

Inside The Circle

To the outside world, we look like an average urban family. I’m the aging dad, high (I’m still not calling it “receding”) hairline, close-cropped hair wearing city-chic because my wife dresses me. My wife, beautiful, hip with her too-cool-for-school (I realize no one says that anymore) sunglasses strutting down the sidewalk. And my son, wearing a Captain America helmet and catching air off the uneven sidewalk on his scooter.

We stop at our local market to pick up ingredients for dinner, because that is how normal, city-people shop. The shop keeper greet us with a friendly, welcoming smile and we exchange pleasantries that show that we’re local and are recognized as such. We stroll through the park to play catch and we see Jafar, the musician, and Mike, the juggler, whose names we know because we are locals. We pass them with a wave and they smile back with a hint of recognition.

There are two groups of people in our lives, those that are outside the circle and those that are inside the circle. Most of the world exists outside the circle, and they do not see the impact that epilepsy has on our lives or the complexities that we struggle with every day. When we buy those groceries, the shop keeper doesn’t know that the ingredients are only for my wife and I because my has epilepsy and is on a special diet. The other park goers don’t know that we are there only for a short time or for the first time in days because my son has enough energy to play that day.

For someone who writes a blog about being the father of a child with epilepsy, it may seem strange that I struggle with who to let inside the circle. As public as this blog is, it is still difficult to talk about what is happening with the people in our lives. How can I explain the heartache of helplessly watching my son have a seizure at the breakfast table? How do talk about why he keeps missing school? Or why he can’t do certain things or why we have to decline birthday parties and events that happen in the afternoon because he needs a nap?

Those outside the circle can never truly know us or our son because my son’s epilepsy is such a big part of our every day. Maybe I am worried about people judging him or judging us. I don’t understand how or why this is happening, maybe I’m so worried that they won’t understand that can’t let them in. It’s hard to overcome those fears, and to be open to sharing that piece of ourselves. It’s hard to trust other people, to be vulnerable, and to take that risk.

I am finding, though, that the more willing I am to take that risk and to share a glimpse of that part of who we are, the bigger that our inner circle becomes. His teeball team ask about him at every game that he misses. People at my office, friends and acquaintances that have met my son and seen him struggle react with kindness. They ask about him and pass along their well wishes. They donate when the call goes out for a charity event. This terrible condition that burdens my son and weighs heaving on our family has also revealed the gifts that come from having more people inside the circle that care.

The Long Walk Home

It was one of those nights when we had to decide between bringing him to his teeball practice or letting him skip it and rest. During the previous week, we had just gotten him back up to a functional dose of his medicine that once again helped stop his daytime seizures. But, after almost of week without them, the nighttime seizures returned. That day, he was spacey, and just “off”, which brought us to having to make this choice. Should we let him go play and do something that he hasn’t stopped talking about the entire week and risk him getting exhausted and more likely to have a seizure? Or should we keep him home, let him rest, and miss out on yet another activity?

Some nights, the decision is easier. If he had a day of seizures, or if his behavior was off, or if he had those big, puffy, purple circles under his eyes, he would stay home. Or, if he had a great day, and a great nap, it would be an easy choice to head to the field.

But on the in between nights, it’s hard to know what to do or what the repercussions might be. It’s like picking the mystery box in a game show. He could pep up and participate or he could lose complete focus and throw baseballs over the fence or somersault across the field. We decided to open the mystery box and take our chances.

With being tired and being surrounded by a gaggle of excited peers, there were a few moments where we had to remind him to stay focused, but overall he did great. Until, that is, towards the end of practice where he had a great hit but was tagged out. He insisted that he was safe, but he was not (by a mile), and what should have been a short discussion turned in to a battle and a long walk home.

He cried the entire way. There was no reasoning, and no real comforting. He was tired, and done, and he just wanted to cry. So we let him. My wife pushed the stroller and I carried the teeball bag on my back. We would occasionally tell him that we loved him, and that we were sorry he was so sad, but we mostly let him cry, his head tucked in his hands or his baseball hat, as the tears rolled down his face.

When we got home, sniffling, he pulled himself out of the stroller, walked up the steps in to the house, and fell on the couch, crying as I helped him take off his shoes and jersey. I again reassured him, rubbing his head and kissing his forehead. As I started to stand, he calmed down and asked me to sit next to him, which I did.

We are not strangers to these long walks home. Last year, they were angrier, with hitting, and spitting, and mean, angry words coming from a crying five-year old. There were days where he would stick his feet in the wheels and laugh, or jump out of the stroller and try to run away. There were attempted trips to the museum or the park that would end before they began with us turning around after only a block or two from our home. It’s hard when the threat of a thunderstorm looms over every outing and every activity. But better the risk of a long walk home after doing something than never leaving the house.