Fall On Me, Dear describes my struggle to survive the unimaginable: the death of my 16-year-old daughter, India from the first reported case of a devastating neurological condition. For ten-years, India was the picture of health. She climbed trees, sang in concerts, and rode around our neighbourhood on her purple bike. Life was perfect. Then suddenly while we were on vacation in Cape Breton, India began to fall down. At first, I attributed it to preadolescent clumsiness, but when she began blanking out it became apparent something was wrong.
For six-years, we lived in limbo, hoping the next medication or neurologist would provide the answer. Meanwhile India’s condition grew increasingly worse. The seizures took over and she lost use of her arms and legs. Still, she was just your average moody sixteen-year old girl who managed somehow despite her limitations to take over four hundred selfies and flip us the finger if we pissed her off. Finally a new DNA test provided the missing link. India was born with a deficiency of an enzyme known as acid ceramidase and it was killing her. Not content to let her die without a fight, we sought the help of a renowned research scientist. It was too late.
There is no name in English for a parent, who loses their child. It’s strange as a writer to find oneself nameless. Often when I tell people India’s story they respond by saying, I Just can’t imagine. I understand this. Before I was bereaved my knowledge of grief was limited. This blog is my attempt to bridge that gap and create a dialogue about loss.