June 6, 2011 was the worst day that a Mother could ever experience. How do you say goodbye, forever, to your son? How does a sister say a final farewell to her brother and best friend?
Just that day, I had started a brand new job. My 20-year old daughter Alex (pictured left), a year older than her brother Evan (also pictured left) and a paramedic in training, phoned me at around 3:30 in the afternoon. She was about to leave for her shift at a local restaurant in downtown Calgary. She said, “Mom, Evan is still sleeping.” I panicked and told her she had to wake him up, as he had just begun a new epilepsy medicine and I knew how important it was to take it on time.
Five minutes later, my daughter called hysterically. “Mom! Evan is dead!" Oh, I will never ever forget that horrifying 'phone call. I screamed, "Call 911!" She said, "No, Mom. It’s too late. He's purple and cold. He's gone. He was face down."
Evan died five days before his 20th birthday. We held his funeral on his birthday.
A couple of days later, I received an email from an organization called SUDEP Aware offering assistance. I had never ever heard the word SUDEP before - not from any doctor or from either of Evan's two neurologists who had cared for him over the three years he had had epilepsy.