Over to You

HAVE WE DONE ENOUGH?

We won’t always be here to care for Heather. We have to trust in others.

FLORENCE McKIE July 18 2005
Over to You

HAVE WE DONE ENOUGH?

We won’t always be here to care for Heather. We have to trust in others.

FLORENCE McKIE July 18 2005

HAVE WE DONE ENOUGH?

Over to You

We won’t always be here to care for Heather. We have to trust in others.

FLORENCE McKIE

MY DAUGHTER’S slender fingers search for food. She picks up an oatmeal cookie, delicately breaks it into pieces, and sets some of them on the placemat to her left. With the poise of a grand lady at high tea, she lifts each morsel to her mouth. Then her fingers stretch again for the remaining cookie fragments. How could I have forgotten she has difficulty reaching across the centre of her body? I nudge the plate to her left, and she finds and enjoys the rest of her treat.

Heather is 46. She is cognitively impaired and developmentally disabled—current

descriptors for someone with multiple handicaps. She was born blind and hydrocephalic, and at age two began having seizures that severely compromised her ability to express her thoughts, feelings and needs. Her speech is described as echolalia: the repetition of a limited number of phrases or nonsense words—a form of autism.

There is Greek music playing in the background. Heather and I don’t understand the lyrics, but her dad, Ken, catches a few words; he tells us it’s about a woman having difficulty keeping the kitchen floor clean because her goat keeps coming in. Heather laughs. She understands—as she does much of what is said around her. Then, a wedding song with the refrain “Dig-diggedy-diggedyda!” begins. She laughs even more. The phrase delights her.

Her life is made up of simple pleasures: a rose bush at the back door; phoning her younger sisters, Katherine and Dana, who live miles away; therapeutic horseback riding on gentle Amber; visiting with Gramma, now 94, and our extended family for special holidays. Loving and being loved.

It is easier to describe Heather’s past and present than to think of her future.

When she was bom in 1959, there were only two options: send her to a provincial institution in Red Deer, 145 km away from us in Edmonton, or take her home. The latter meant going it alone except for the invaluable support of family and friends. Eventually, there was help from agencies such as the Canadian National Institute for the Blind, the Alberta and Canadian associations for the mentally retarded (since renamed associations for community living), the Autism Society, and others that sprang

up from parental desperation and advocacy.

Heather moved to a group home 35 km away when she turned 18, but remained an integral part of our family. Typically, she would come home for the entire weekend. Then, there was little time to think of the future. Day-to-day was the best we could do. But there was always an undercurrent: ’’What will happen to Heather when we are gone?” The full import of the question was masked by the naive thought, “That’s a long time away.” Not any more. It’s just around the corner. Maybe tomorrow.

Already, in fact, Ken and I can only manage having Heather home from mid-Saturday to early Sunday evening. And looking to the future, we have put certain measures in place. For years, we have maintained a binder to share our joys and concerns with the staff

at her residence. Periodically I add another page: what her latest phrases mean, the name of her new dentist, what and what not to do when she has a seizure. Or I add a photo, or I phone with Heather’s latest news. Anything to help everyone understand her better—and to stop her biting the base of her thumb in frustration because she can’t communicate on her own.

Since Heather turned 18, Ken and I have been her legal guardians, responsible for monitoring her safety, well-being and care. Our role is reviewed and renewed every five years under the Alberta Dependent Adults Act. Our wills provide for Heather under the trusteeship of her sisters, who have graciously agreed to oversee her financial affairs. And we are fortunate that for so many years a not-for-profit organization, the Robin Hood Association, has provided her with a day-activity program and a second home in one of their residences. Without hesitation, we entrust her future to them and to their continuing to provide these and other services as needed.

Ten years ago, Heather’s grandfather died. Once in a while, something triggers her memory of him. “Grandpa? Grandpa?” she insists.

“He can’t come,” I say.

“Waiting,” she replies, “Waiting.”

“Yes, I know,” I reassure her. “He loves you very much.” And I kiss her cheek—a poor substitute for his love for her.

Dana was relieved when I told her about this exchange. “It’s good to know the language you are using,” she said. Some day, she and Katherine will have to explain to Heather why Ken and I are no longer a part of her life.

It is easy to put physical and financial matters in place—but it takes a lifetime to build the trust that will help Heather cope with whatever the future holds. We can only hope that what we have done will be enough. And that those in her life will care enough to protect and respect her. Iffl

Florence McKie is an Alberta-based writer.

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