Today I hugged one of my oldest and dearest friends. I hugged her for a long time, because this was the day of her husband's funeral. Kathleen Campbell Jordan married Bill Jordan 47 years ago, ten years before Jim and I tied the knot. Kathleen and Bill have three grown children - Christopher, Geoff and Suzanne. Chris has disabilities. Suzanne came to the cottage with us one summer to help us look after Nick and Natalie. Our two family experiences are intertwined in many ways.
Twenty-six years ago and the day after we received Nicholas' diagnosis of severe brain damage, Kathleen arrived at our door. Here's how I wrote about that day in my book, The Four Walls of My Freedom:
At that time, my husband Jim was on loan from Foreign Affairs to the
Prime Minister’s office and would come home near bedtime to feed Nicholas,
still suited, watching the news. Word
spread in our family about the “condition”.
A cousin came over with a friend to give advice. The friend’s business card read “Volunteer
Consultant to Families with a Child with a Disability”. Her name was Kathleen Jordan and she had a
son of sixteen with incomprehensible difficulties. He was blind, had cerebral palsy, Tourettes
syndrome and epilepsy. I started to
examine this blonde woman in my living room.
Her nails were beautiful; they were glossy red and perfectly
rounded. I asked, “How is it you have
time to do your nails?” I really wanted
to know.
Kathleen had a
huge pile of papers with her. She patted
me and said “I have some information here, but I completely understand if you
want to look at it some other time”.
“No!” I cried, “Give them to me now!
All of it.” Years later, I heard
the expression “cognitive lifeboat”. In
that moment, I found mine, and, gasping, climbed aboard.
Kathleen created those arrangements for Chris after years of trials and errors. Christopher has good days and bad days - on good days, he can direct his own care, tell his helpers which medications he needs, call friends and carry out many activities of daily living without assistance. On bad days, Chris needs almost total care. Kathleen always wanted supportive housing arrangements that would allow Chris the flexibility to be in charge of himself on good days, but give him intensive care when he needed it at other times. Arrangements like that don't exist in our system, hence the failures that occurred in the past. But Kathleen and Bill persevered and now Chris has a good life.
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