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.


A Message Of Hope

I was nervous walking up to the doors of the classroom. I put my hand on one of the door handles, leaning in close, hoping to hear the conversations in the room. I turned slightly and could see in to the room through the gap between the two doors.

The tables were arranged in a “U”. The door that I was hiding behind was in the back of the room, so I saw the face of the presenter and the backs of the heads of some of the attendees. Shifting left and right, I could see the sides of the faces of those seated on the sides. I took a deep breath, turned the handle, and quietly walked in to the room.

As I came through the doors, the presenter at the podium and other staff smiled and greeted me quietly and warmly. A few of the attendees…parents…turned briefly to look at me and then back to the presenter.

As I moved to a seat in the back of the room, the presenter said  “…and you will hear from one of our parents shortly” and gestured towards me. I sat, flashed a smile and casually nodded as I made eye contact with the other parents that were now looking in my direction.

I pulled open my laptop, pretending to make last minute changes to my slides (that were actually not mine, they were my wife’s). I wasn’t ready for eye contact. I took a few deep breaths and tried to calm my nervous energy.

I had been in this room before. Just over a year before, I sat where the other parents were sitting, learning about the ketogenic diet. Like these parents, I was there because I had a child with epilepsy that was not responding well to medicine. Like them, I was scared…about epilepsy, about the future, about how scary and terrible and daunting the diet seemed to be. Like them, I was there trying to find hope.

The keto team at the hospital puts on these information sessions once a month, giving the dirty details of the ketogenic diet as a treatment for epilepsy. The day is filled with the history and the application of the diet. There are demonstrations of how a meal is measured. The social worker talks about support during the journey. And at the end, the grand finale, a parent of a keto kid takes the stage.

On that day, that parent was me.

My mind kept going back to when I was in the class. We had only been out of the hospital for a month or two, and my son was still seizing, still not responding to medicine, and still having side effects from the medicine that he was on. I was still reeling from the trauma of his ongoing condition. My wife had to stay home with my son, so I went to the class alone…cared, overwhelmed, and alone.

I remember being more buried by the information that was being presented. The diet works for some people, not for others. The diet is hard work. Thoughts of what was happening to my son mixed with the sad possibility that the diet wouldn’t work, or that it would but he wouldn’t be able to scarf down a bag of potato chips or eat a candy bar. By the time the parent speaker, Amy, stepped up, I was raw.

Amy talked about her son who was on the diet for two years. She talked about how the diet worked for them, and that it was hard at first, but became easier. She shared some of her tips, and she brought her son in with her and he sad quietly eating his snack…a snack that looked like a normal snack, except for the shot of oil at the end. After the class, I talked to her, and we talked about what was happening with us, and I asked if my wife could contact her. She said yes. Because, as I’ve learned, we’re all in this together, and we need to support each other, because no one understands what we’re going through like other people going through the same thing.

I thought about Amy, and about how I felt sitting on the other side of the table, as I nervously walked up to the podium. I made a checklist in my head of the things I wanted to talk about. I wanted to talk about how scared and overwhelmed I was, and how hard the diet was at first. I wanted to talk about my son, and how much better he was doing since we started the diet. But mostly, I talked about hope, the thing that I went to the class desperate to find a year before, and the thing that I most wanted them to leave with.

I scanned the room. One mom who was too overwhelmed and had left the room was making her way back to her seat. The other parents looked exhausted after a long day. And now, they were looking at me.

“Hi, I’m David, ” I began, “and just over a year ago, I was sitting right where you are.”



Making Moments Matter

Last weekend, we were in Washington D.C. for the Epilepsy Foundation walk. We had planned the trip for months, and we tucked away some money to pay for the trip and activities while we were there. As it happened, there was a playoff hockey game in D.C. on Saturday night. It wasn’t something we planned on, and hockey tickets are expensive…playoff tickets more so.

I called my wife and told her about the game. “We should do it,” she said.

There was a time in my life where I would have argued. Where I would have tried to rationalize the cost, and crunch the numbers, and adjusted the budget. My wife tried for years to teach me the value in making moments matter, but I had a hard time listening or believing her until my son got sick.

The past few years have been an endless struggle to control his seizures, switching medicines, managing side effects, and behavioral issues, a difficult diet, and the stigma of having epilepsy. Some days, he can’t control his body, or he seizures at night and has an accident. He wakes up some days wanting to give up, or comes home from school embarrassed because someone laughed at him for drinking oil with his lunch. It’s an impossible life for a six-year-old.

Moments don’t need to be expensive or cost money at all. As we walked down the National Mall, he was just as happy playing tag and hide and seek on the grass, and doing the scavenger hunt in the hotel. I could have said I was tired, or that I wanted to see the sights.  But those little moments of playing his game and giving him an opportunity to feel normal and to simply have fun matter, too.

making moments matter epilepsy

But hockey is one of those things that my son hasn’t given up on, and the universe was sending me a message by putting a playoff game in the same city where we would be and, to be sure I wouldn’t miss the message, the game was also against our home team. We bought the tickets and surprised him with the game.

making moments matter epilepsy

Even though our team didn’t win, the home crowd appreciated his enthusiasm and pat him on his head as he cried in to his hands after another tough loss. As we walked out, he had a smile on his face and moved the home team up on his favorite team list.

I’m grateful my wife has tried to teach me to make moments matter.

And I’m glad I finally listened.