Last weekend, we participated in the Epilepsy Foundation National Walk for Epilepsy in Washington, D.C. It was so different from the first time we attended two years ago. That year, we were only a few months in to our diagnosis and had only recently gotten out of the hospital. We were physically and emotionally drained and couldn’t even complete the shorter “fun course”. While it should have been comforting, I felt overwhelmed to being surrounded by so many people supporting a cause that we knew little about and were thrust in to.
This year was a completely different experience. We knew other people at the walk. We met some online friends in person for the first time. We saw people from our local Epilepsy Foundation affiliate. And there was a sense that this really was our community of people trying to make life better for my son and other’s like him.
It was a lot for my son to take in, too. He was excited when we got there, but the more people we talked to and the more he was exposed to the energy around him, we could see him start to shut down. Right before we started the walk, he slipped in to his “wonky place.” His eyes glazed over and he tried to run away, but I help him and sat with him long enough for him to calm down. He reluctantly started the walk, and I could feel that we were teetering on the edge of a full meltdown. But a quarter of the way in, we passed the Washington Monument that he recognized from the Spider-Man: Homecoming movie. I started talking about the movie and, a few minutes later, he started engaging in the conversation and I could see the tension leave his body. By the end of the walk, he was sprinting across the finish line to officially complete our first National Walk.
If you haven’t done either the National Walk or an event from your local Epilepsy Foundation affiliate, I encourage you to try it. The first one might be overwhelming, but it’s important to know that there are others like you out there, and that there are people and companies that are working hard to improve the quality of life for people living with epilepsy. We are involved with the Epilepsy Foundation of Eastern Pennsylvania, so if you live in that area, you’ll know at least one family at the event, which can make it easier. But if you don’t, go to at least one event and you’ll start building those connections to other families and it can turn a sometimes isolating condition in to one of community. You are not alone.
When your son is a bit older you might consider Kids Speak Up. Children with epilepsy travel to Capitol Hill and speak with their legislators about the importance of funding for research, services, etc. I am so glad we went!
That sounds like a great opportunity! My wife went to Harrisburg the week after the walk to do just that, as well. Hopefully more of us telling our very personal story will help influence the legislators to do the right thing.