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Posts Tagged ‘severe brain damage’

Be who you are. / Give what you have.  (Rose Ausländer )

 I watch my precious six-year-old Ella in Occupational therapy as she threads the letters to her name through a fluorescent green pipe cleaner. She recognizes the letters—she has been reading for more than a year. But she struggles through fine motor skills exercises because of her small hands and shortened fingers. typical for persons with Down syndrome.

At times she breaks away and puts on a show, her head between her knees, a look-at-me-I’m-cute expression on her face. I remain calm without reacting, showing no censure. Only what I hope is a you-can-do-it look. The OT is in charge. And she encourages Ella. With both experience and love.

And I realize how much I treasure my granddaughter because another image of someone with handicaps far more severe, appears in my mind. Her name is Diane Smith. I have never met her except through the written word, Dancing in Heaven, a sister’s memoir by Christine M. Grote.

The book is available through Amazon.

front cover

dancing-in-heaven cover

When Diane was born young Christine had difficulty saying her name. Diane became Annie. In the 1950’s diagnostic skills were primitive. And Annie and her family went through hell as the frightening news appeared. Annie was seriously brain-damaged. She would never walk, talk, live a normal life.

Through Christine’s sensitive, never-glossed-over memories about her sister’s life, Annie becomes real.  Beautiful. An angel spirit in a broken body. Yes, I suggest a box of tissues nearby. But I also recommend absorbing every word.

 Then, perhaps, the next time a man, woman, or child appears bound to a wheelchair at the mall or some other public place, that individual won’t seem either frightening or repulsive. The natural response will be an ability to look the person in the eye and see a unique spirit, perhaps someone with far more courage than many people could fathom.

the author, Christine M. Grote

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