In one week my 19 year-old daughter, Abbey, was moving to another province to start a new chapter in her life, at Humber College Theatre Performance Program. August 16, 2013, I left the house telling her I would only be gone an hour and I reminded her she had LOTS to do before she moved. “I know Moooommmm” was her reply; her last words to me.
I was worried about Abbey leaving and how she would manage with her epilepsy. Who would be there to help her recover? Who would make her a soft egg salad sandwich for her bitten tongue post-seizure? I knew I had to let her go, spread her wings and fly. When I arrived home I found her exactly where I had left her, except she had fallen forward. Abbey was still and ghostly white. There was no evidence of a typical seizure; no evidence that she struggled.
The Medical Examiner confirmed that Abbey had passed quickly and that it was likely related to her epilepsy. The autopsy report later confirmed she died from complications of her seizure disorder. Abbey had suffered with petit-mal seizures from about the age of 7, controlled with medication for several years. At 15 she suffered her first tonic-clonic seizure.
Somehow Abbey never really let seizures get in the way of what she wanted to do - perform. She loved the theatre, loved to act. Abbey could memorize lines and I wondered how she could do that? Sometimes having a seizure would interfere with preparing for a performance or rehearsals. Abbey just kept moving forward. She was very social and thrived on being with people and her friends. Abbey mentored other students and counselled on life, love and being yourself at all costs. She had a part-time job at Lush in one of the malls and absolutely loved it. Her customers loved her.
Since Abbey’s death myself, her Dad and 17 year-old brother wonder how we are to go through the rest of our lives without her in it. Abbey and I were friends, and we were at such a good place.
I realize, since her passing, that I had been living my life in a state of hyper-vigilance. Whether it was listening for a seizure, feeling panic when the phone rang or looking upon my sleeping daughter post-seizure, wishing that I could take it all away; always worrying that something bad would happen if a seizure occurred away from home. I never, ever imagined that she would die.
Many of us are still dealing and reeling from the loss of Abbey. I had never heard of SUDEP. Abbey’s neurologist was shocked by her death. It is clear to me that there is a need for awareness. Had I known that death was a possibility, how would I have handled things with Abbey? I held her accountable to be compliant with her meds, get enough sleep and eat properly, but she was a teenager living her life. Would I have wanted her to live her life any more inhibited than she did already?
I hope that in time we can find some answers to SUDEP. My heart goes out to all families that have suffered a similar loss.
I would like to share Abbey’s last Facebook post with you: “If there is something you always wanted to tell someone, do it now. Just go do it right now. You’ll be better for it.”
Global Conversation 2014