HAVE WE DONE ENOUGH?

This article focuses on the author's daughter, who was born with disabilities, and her hope that they have done enough to provide for her future when they are gone. 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. Her life is made up of simple pleasures. It is easier to describe Heather's past and present than to think of her future. Heather moved to a group home 35 km away when she turned 18, but remained an integral part of our family. "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. 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. 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.