Castaway

We went to Florida recently to visit friends and to see our family. My son’s nanny from when things were at their worst had moved to Miami with her family. On our last few trips, we flew in to see them before heading over to see my parents.

In addition to her understanding our son’s history, they are just good, generous people who are part of our family now. They moved away just over a year ago and have established themselves in their new city. They have a child of their own now that she takes care of and her husband has a good job. We stayed with them at an adorable house they bought not far from the city. They took us to the beach and to different eateries nearby. We got a glimpse of their new life in their new home.

One night while we were down there, my wife started crying. She said she felt like we were stuck in the same life while everyone else’s lives move on. I felt the same way.

Maybe it was the tropical air and the palm trees, but I thought of the Tom Hank’s movie Castaway. In it, the main character survives a plane crash only to be stranded on an island in the middle of the ocean. Years go by until he is eventually rescued. When he returns to civilization, he finds that the world has moved on without him. Technology has advanced. Friends have moved on with their own lives.

The world is moving on without us. Our lives may be slightly better or slightly worse in some areas compared to previous years. I have a new job and we have a new house but, as a whole, it feels like the same life. We’re still struggling with a sick kid, with seizures, with behavior issues. We’re still dealing with school, and doctors, and appointments, and therapies. We’re still making food for the ketogenic diet and picking up prescriptions at the pharmacy.

Maybe it feels this way because we’re still in the middle of it. It’s hard to feel like you’ve moved on when you aren’t able to let go of anything from the past. When everything is present, there is no moving on. When you wake up and have the same day over and over again, you’re like the character in the movie, stranded on an island while the rest of the world moves on without you.

Our Community

My wife and I were honored as the King and Queen of the Epilepsy Foundation of Eastern Pennsylvania’s Mardi Gras Galas. The Gala is the signature fundraising event of the foundation and brings together Philadelphia’s top neurologists, hospitals, pharmaceutical companies, and members from its business and legal communities to celebrate the Foundation and its accomplishments to improve the quality of life of individuals living with epilepsy and their caregivers.

We were joined at the Gala by an extended table full of our family and friends. There were people at our table that made my son better and that made our lives better. There were people at our table that gave us hope and made us feel like we were not alone. There were people at our table that gave my son a chance made him feel special and normal at the same time. Instead of seeing a sick kid, they saw a baseball player, a jokester, and a dancer. But mostly, they saw a child. And they let him be himself and accepted him for who he was. That is a gift that I can never repay, and having our table full of those people…our people…made that night even more special.

Good evening. We are honored to be here with you all tonight. My name is David Monnerat. This is my wife Kerri, and this is our son.

[Our son: Hi, Is everybody having a great time??]

Our journey with epilepsy started 3 years ago when we moved from Colorado to Philadelphia. Two miles away from where we are tonight, Mitchell had his first seizure. For many of you in this room, you know how scary that can be. We were alone in a new city with no support and found ourselves locked in the hospital watching our son slip away, fighting a battle against an enemy that seemed determined to take him from us.

We have never been so scared, we have never felt so alone. But little did we know, our journey couldn’t have started in a better place. I always say, “We don’t believe there is a malevolent force working against us, a trick of fate where we drew the short straw and our son got sick! We believe this is our path and everyone has “something”. That being said, I am more certain now than ever that there is a force, an energy, a God that ensured we were given every possible gift to help keep us going through this journey. We were given this wonderful city, Children’s Hospital of Philadelphia, the Epilepsy Foundation of Eastern Pennsylvania, and the system of support that has come to form our village who are sturdy and enduring, loving and true.

There are people in this room that saved our son’s life.
There are people in this room that put our son back together.
There are people in this room that made him a part of a team.
There are people in this room that have become family.

If you ever wonder if these things you do ever make a difference to anyone, I’m here to tell you that the answer to that question is “yes”.

Thank you for the honor. Thank you for your support for the foundation and for this community. Our community.

Thank you.

Bowling With Friends

Recently, we went to a friend’s kid’s birthday party at a bowling alley. Of course, I had to bowl, too. In the lane next to me was a boy named Brody. He had a tiny, wiry frame and thick, black glasses. When we went for the same ball, he spoke to me but I wasn’t sure what he said. I asked him to tell me again and he repeated himself but I still didn’t get it. His mother who was standing behind him came over and told me it was okay if I didn’t understand him. She helped him get his ball and guided him back to the bowling ramp.

The kid was a machine. He bowled ball after ball, sending one down the lane and then excitedly waiting for it to return up the chute. It was always the same pearl-colored ball, the same adjustment of the ramp, and the same smile.

When the pizza arrived and the other kids sat down to eat, Brody kept bowling. His mother would stick a piece of pizza in front of his face, he’d take a bite, then put his ball up on the ramp. It was like watching an endurance athlete compete with a trainer by his side giving him fuel.

At one point, Brody looked at me after I got one of my many, many (two) strikes and said “wow”. Then he said “fast”. I told him that it helped that I was bigger, but that I’ve watched him send some balls down pretty fast as well. He smiled and picked up another ball and sent it down the lane. “See?”, I said. “Fast.”

For the next hour, Brody and I bowled side by side. We cheered each other on and after almost every ball we’d share a one-liner. I’d say “So close!” “Great ball!” “You’ll get it next time!”. He’d tell me to throw the ball fast again and “wow!” if the pins made a lot of noise and bounced around in the pit.

At one point, Brody sent the ball straight down the middle of the lane. “That’s a good ball, buddy! Good ball!” I exclaimed. The ball pushed through all the pins leaving none standing. He looked at me with a look of such joy and I had the biggest smile on my face. Then he started dancing. Forget end zone celebrations from athletes that do them all the time. There is nothing like watching a kid who accomplished something own it with dance moves.

At the end of the party, I told Brody how much fun it was to bowl with him. He reached over, smiled, and tickled me. I smiled back and went to change my shoes. Brody picked up his ball and carried it to the ramp.

As I sat swapping one pair of stylish kicks for another, I noticed my wife talking to Brody’s mom. I didn’t think anything of it then. But as we headed out the door, Brody’s mom came over and gave me a big hug.

My wife told me after we left how much the way that I treated Brody had meant to his mom. She told my wife that my son saw I how I treated Brody, so he will learn to treat people the same way.

It broke my heart. All I did was treat Brody like the kid that he is, and that was enough to cause a reaction in his mother. Because, for whatever reason, the default from people is to not treat him that way.

It made me think about how people treat my son. Most of the time, he looks like a normal kid and his seizures happen inside our bubble at home. But there are differences that kids do notice and that they already question. Why does his lunch look different from ours? Why can’t he eat the birthday cake? Why does he have an aide to help him in school? Why does he leave early or why is he absent so much? Right now, these questions come from curiosity. But I’m afraid that the day is coming when those around him will turn those questions into ammunition. We have lost our tolerance for people and things that are different.

But the response should not be apologies and isolation. It should be inclusion and acceptance. I’m trying to show my son how to treat other people with kindness and respect so that he will do the same and expect the same in return.  I’m trying to raise a resilient kid that won’t let labels slung in fear or ignorance define him. I want him to understand that everyone has their stuff. But if we make an effort to get through that stuff, we can find a person worth knowing, just like he is worth knowing. And like Brody is worth knowing. And, sometimes, we get to make new friends and, if we’re lucky, we get to see the magic of a smile or a celebration dance. And, sometimes, that effort and that magic will affect the other people around us, too.