As Adam napped peacefully after a trip to the doctor for a low fever, I went for a run, unaware of how our lives were about to change. When I returned, I heard my husband’s frantic voice say to the dispatcher, “Ok, he’s breathing now.” That was Adam’s first seizure.
A week later, he had another seizure. He was diagnosed with epilepsy that day. The good news, we were told, was that most cases of epilepsy were controlled with medication.
After several attempts to control his seizures with medications, Adam actually enjoyed 14 months with no seizures. We thought we had it licked! He was attending school and reciting “The Three Little Pigs” in French. Then the seizures returned. We were devastated. Since then Adam has endured more than any parent wants to see his or her child go through. The combination of countless seizures and the side effects of medications has had a profound impact on his life.
With age, developmental delays have become more apparent. While his peers delve into reading, overnights and organized sports, we are off to therapy to work on cognitive, physical and social skills. We try to maximize his good days and celebrate his every success. It is music to our ears to hear him exclaim, “I did it by myself!”
Adam amazes us with his resilience and cheerfulness. He’s a delightful child with an infectious laugh and a smile that lights up a room.
As parents, we grieve the loss of the dreams we had for Adam, but he keeps us redefining hope. We hope for seizure-free days and a life for our son without the side effects of treatments. We hope for a cure.
Sara, Adam's mom