The first time I visited the place where I would leave my mother for the rest of her life I knew I had been there before.
It wasn’t physical similarity to an earlier place that brought this sense of déjà vu. The room had no colorful alphabet, or calendar, or map of the United States. No adaptive technology devices, unless you counted the wheelchair straps securing their frail cargo. There were no computers with modified touch screens, or work desks tailored for special students; no vocational training stations for teaching skills that aim, someday, at employment.
But I knew this room. I knew this feeling. I had been here before.
****
She didn’t recognize that she was moving, that her ride in the Medicar that afternoon would terminate at a new facility better equipped to handle patients advanced as far as she has in this disease. She is unaware that she is surrounded now by strangers, caregivers to whom we entrust her welfare, her reliance on others complete. Protected, at least, by this disease that strips all else – character, autonomy, achievement – my mother is spared knowing that these rooms will house the conclusion of her days.
She has been gone for many months now, lost to the appalling affects of Alzheimer’s.
I tell myself – for how can I know? – that the worst days are behind her; the confusion, the agitation, the gradual, insidious losses chipping away at her hold on the qualities that had shaped her: her talent as a fashion illustrator; her style sense and skill as designer and seamstress; the classic looks that made her, always, the most beautiful woman in the room. She doesn’t appear to mourn these losses. The disease which has stolen these things has the grace to blunt the pain of their passing.
I remember, though. In that tour of the nursing home, the dayroom filled with fading ghosts who share the vacant gaze of my mother’s eyes, who slump and gape and shout and moan, I knew unsparingly what my mother has lost. My mind silently rebelled: “It can’t be that she belongs here, that this is what a life of vibrance and accomplishment has come to. Not my mother…”
And there I was again, in that other room, which I’d visited eight years earlier, several weeks after I was told that the special education program in our home school had proven insufficient for the level of my son’s disability. There were other programs, alternate classrooms, that perhaps we must consider, which taught not just academics, but life skills…
Of course I knew that this was true. Autism is a profound disorder. Lifelong. I understood. I did. I recognized, I acknowledged, I concurred. Wearing the upbeat smile of mother-advocate, I visited the Education and Life Skills classroom prepared, I thought, to embrace whatever was necessary to help my boy.
The staff was warm, nurturing as they cared for and educated these special children, some in wheel chairs or leg-braces, some who did not speak but communicated by other, atypical means; conditions familiar to me but more threatening as a whole, a strange society my son was bidden to join, branded now as one of the collective of the disabled.
But the peculiarities of my child were not to be permanent, you see, because things would change, somehow — they would. It would be different someday for my boy. My son would be the exception, the miracle…
They had just finished lunch, in their contained world-classroom, and a scattering of potato chips lay on the floor beneath their table, unremarkable, certainly, following an elementary school meal. Yet my whole world came down to that pile of spilled food, the mess and disorder and hopelessness it represented, the gaping maw of an alien world.
Banishing the image to the attic in my mind reserved for such troubling realities, I continued with the orientation, nodding at staff, commenting; agreeing, agreeable, numbed by the cunning strength of denial.
My shelter of self-deception gave way that evening as I struggled to clean another spot from the carpet on the family room floor. Andy found me on my knees, scrubbing frantically at a stain I knew would be permanent, and he said, “Hon – what is it? Let me, I’ll do that – ”
“Not my boy!” I screamed. “Not my boy! Oh God, not my boy!”
****
I’m told my mother has adjusted well, cocooned for the most part in her impenetrable world, but smiling from time to time. Perhaps she remembers some earlier pleasure: a favorite pet, my father’s touch, the enduring tune of a well-loved hymn.
Images flash now through my own memory: a turquoise party dress she’d sewn for me, and the perfectly matched shoes she found, triumphantly, on sale in Fields’ basement; my mother weeping as she cradled our lifeless terrier at the side of a rural Minnesota highway; her knowing smile when I was five years old as I told her, solemnly, that I’d never get married, because I would never leave her.
My son laughs frequently, and often I don’t know why. But his joy is infectious, and we laugh with him. Vacation days so eagerly anticipated by other children are more difficult for him; he misses his classroom. The routine, the schedule, the pre-vocational training at which he excels, have given him an independence I once despaired of ever seeing.
I don’t know if he senses the enormity of what this disorder has cost him, if he recognizes in his own way that there was once more to be hoped for.
But I don’t think so. Insulated from such doubts and questioning and regret, he is happy in the world he knows.
I will remember this.
My mother died on April 28, 2005, at the age of 78.
