by Kate Cooney-Picco
My son had his first seizure when he was 11 months old. At the time they thought it was febrile and, although a scary incident, I thought it was something we could deal with without medication. Within five months, he had a 20-minute, partial seizure, and our lives changed. He started the first of what would be eight different medications, most with little success. From his first seizure until he was five years old he had 135 tonic colonic (or “grandmal”) seizures, the longest being one hour. He is diagnosed with Generalized Epilepsy-Febrile Seizures Plus. Liam’s seizures changed our lives in a way that is hard to describe to most people with the exception of other parents who have children with epilepsy. The uncertainty and panic was ever present, but the isolation of the diagnosis was potentially the most challenging. Our family had no experience with seizures and no one in our group of friends had dealt with epilepsy (although when I start talking about my son’s condition, I’m always surprised by how many people have some connection to epilepsy). As with other life challenges, we thought we could handle it on our own and move on. We were wrong.
Thankfully, I had received a flyer about the FACES annual conference and attended the daylong event in October 2004. It was the best thing I did to help not only our son, but also myself. For the first time, I was with a community of people who “got it”. My involvement with FACES saved me from the isolation that is often hard to escape. The people I met at the conference and since then have helped me immeasurably. We are traveling a similar path. We finish each other’s sentences. We commiserate at the low points and celebrate the high points. We are a lifeline for each other when we need it the most.
When Peggy Guinnessey approached me about being part of the FACES Parents Network, I jumped at the opportunity. We are attempting to expand on the success of FACES' informal network and build a larger community of parents who can support each other. We are meeting with families who have newly diagnosed children and connecting them with parents who have been in a similar situation. In the past few months, I am sure I have gained more from my interaction with these families than I have given. I am continually amazed and comforted by the strength and resiliency of these amazing parents.
Thanks to the fine work of NYU's Epilepsy Center, Liam has enjoyed a healthy 2009. I thought when we had reached this point there would be little I didn't know about how to manage life with epilepsy, but the challenges continue...schooling, therapies, peer relationships. Thankfully, I have an incredible community of parents to turn to - their advice and compassion continue to change our lives.