Tag: epilepsy

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.

Neverland

Early in the morning, my son had a seizure. As his body tensed and contorted, his lungs expelled air through his vocal chords. The sound it made traveled between the open door of our rooms and woke me up.

I pulled off my covers and made my way into his room. He had sat up, but he was already making his way back on to his pillow. Standing at the head of his bed, I reached my hand through the slats and stroked the top of his head. I whispered to him that he was going to be okay and that he should go back to sleep. He eventually did, so I returned to bed.

I checked the clock. There might have been enough time for me to fall back to sleep, but it was also close to the time that I needed to wake up. While I pondered what to do, I stared at the screen of our monitor. My son was asleep, with a blanket draped over him and his two fingers that he still sucks in his mouth.

My restless, exhausted brain started to drift. Someday, I thought, he’s going to grow up. Instead of the sound of a child, I will hear the deeper sound of a young man echoing through the hall. I shuddered at the eventuality and gave up on the idea of going back to sleep.

I started to think about what else was going to change but stopped myself. I see the boy on the monitor and can’t think of him being anything else. If I knew where Neverland was, I would take him there so that he would never have to grow up.

In Neverland, he could stay the boy who sleeps in our bed when he is sad or afraid. The boy who sits on my lap when he needs to be held. The boy who looks at the world with wonder and compassion. The boy who doesn’t feel the pressure of the adult world. The boy we can shield from how ugly that world can be.

I want to keep him at this age because it’s only going to get harder for him. He’s going to start questioning his value and his worth. His gentle soul and open, hopeful, dreaming nature will be tested, as will his belief in magic and possibility. I don’t want him to ever doubt that he can fly because the moment he does, he will cease to be able to do it.

I know that instead of wishing for him to not grow up, my responsibility is in preparing him for the world. Instead of trying to keep him young forever, my job is to help him grow in a way that encourages the magic inside him. Instead of losing it, it will be what helps him believe that he will always be able to fly. But I thought we would have more time before the real world penetrated our existence. Maybe I thought it would never happen.

When Peter invites Wendy to forget everything and join him to live in Neverland and to never grow up, Wendy answers “Never is an awfully long time.”

I stared at the monitor and thought that “never” was not nearly long enough.

It Can Always Get Worse

We finally got a second opinion. Not because we didn’t think the doctors at our hospital were doing everything they could. But because that’s what responsible parents do.

I wasn’t expecting a miracle. I wasn’t expecting someone to tell us we missed something that would cure my son’s epilepsy. We were looking for another perspective or treatment that we missed. We hoped that someone out there had another case like ours and could provide some insight. We wanted a little more hope. We wanted a little more of something to hold on to.

The hospital sent the report to my wife. That night, she tried to tell me what it said, but I didn’t let it in. I nodded as she spoke the words but I put my guard up and those words bounced off me and fell to the floor. For the rest of the night, I stepped over them as I distracted myself with other things until it was time to go to bed. But I didn’t sleep.

The next day, I started to feel the effects of the night before. Not only the report but how I reacted. How I tried to ignore it to make it less real. How not facing it doesn’t make it go away. And how I left my wife holding that emotional weight by herself.

When I got home from work, I hugged her and apologized for leaving her stranded. I asked her to send me the report, and I read the pages of detailed notes that the doctor had put together. It was a thorough summary of the last three years of our lives. It included confirmation that our doctors are doing the right things and that there wasn’t anything we missed. Then, towards the end, I saw what I didn’t want to see the night before.

What should we expect in the short and long term? Is there any other information you feel would be helpful for us to know?

I do worry that his clinical picture has raised suspicion for a myoclonic epilepsy that may be progressive, in which case, continued difficulty in treatment and learning decline can be seen.

It wasn’t the first time we heard that. We’re three years in without seizure freedom, and it’s feeling like a more elusive goal every day. Our doctors alluded to the possibility but kept us focused on stabilizing what we can now. The near-term goals were a welcome distraction from the long-term possibilities. But I also don’t think about it getting worse because I can’t think of anything worse than what is happening to him now.

That night I laid next to my son as I put him to bed. I told him that I loved him. That I would always be there. That I was sorry that his life was so hard. I was trying to communicate my feelings to him. But he’s eight and doesn’t understand the words we use to express those very big feelings.

Somedays, neither do I.

But I feel the need to get them out and hope that he will someday be able to understand. I worry that there will be a window between now and if things get worse where he is able to grasp the meaning in my words. I don’t want to miss that window. Even if it only cracks a little, I want to get something through. Because if things do get worse, I need to know that he will have something to hold on to.