Tuesday, June 21, 2011


Envelopes with blue print in the upper left hand corner invade our house all the time. My dining room table is currently covered in neat stacks of envelops--what's left over a period of a couple of months after the household bills have been culled, the emergencies dealt with, and what remains are events, instances, points of view in writing, voices from the far outside world that can be muffled indefinitely.

This envelope with blue print is from the Make-a-Wish Foundation. Approaching these large organizations, this and Disney, is something my husband does. I'm not always sure why--maybe it's part of the way we manufacture a life for Robert. We require superstructure. We make things for him: this house, outings, birthday parties, contact with friends. Robert lives inside this place we've made.

I'm tempted to believe that, for other families, life is organic: reaching out of the earth like a plant rising and rotating toward the sun. Maybe not.

While I think of the Make-a-Wish Foundation as granting requests for children who will die, the website simply states that it is for "children with life-threatening medical conditions." I breathed softly in and out my relief when I read this because I feel vaguely as though asking for a wish for Robert is some kind of untruth. I can't conceptualize his dying. I was going to type "death," but I couldn't type anything that smacked of finality. "Dying," the participle, is always suspended and ongoing.

Sometimes, when I'm looking at the medical bills, the thought that these may not be endlessly present wafts across my mind like vapor. Then vanishes. Or I wonder what we will do with all the equipment like statuary in corner alcoves.

When, one by one, my grandparents died, it seemed as though they went behind a curtain. They vanished, leaving a bright mark at the spot where they were and then were not. While I know they are gone, for me, they remain very much alive in memory and there are moments I visit them periodically in my off moments.

I mull over things until I reach a decision, and, with Robert's new diagnosis, I have chosen to ignore it. Mostly. The Make-a-Wish Foundation is a reminder in an envelope with blue in the corner. Just in the corner.

Robert may live until he is 25 or 30. Not me pushing back a sense of the inevitable, but the shifting truth of medicine itself in which some prognoses move with the slow, shape-twisting motion of amoeba and other invisible cellular and sub-cellular organisms. The type of thing that also populates the soil, both helping plants to grow and decomposing them when they're gone.

A few times this past year, I have deliberately tried to imagine what it would be like if Robert were not "here." As though he would be somewhere else. All of us do this--a matter of looking ahead at life and imaging. Mostly, people imagine good things. In my case, any forward-looking I might do now involves this idea that Robert may or may not be here at some indeterminate point.

At first when I thought of this, it was a vanishing, a vaporization. And static. Just things missing inside the house, things gone, an inability to imagine any of us in action: je fais, il fait, nous faisons.

A structure changed and rebuilt.

But now, I realize to have Robert gone would be an uprooting. An upward tug as the crinkled plant is lifted and the root apparatus with its dendrites, root stalk, the fine threads of its exploration into black soil, all this emerging from the ground with a certain force, what bound him to us snapping in a hundred different places, some of the plant tentacles broken off and left to fester. The topsoil of our lives churned, overturned, and scattered, a loose pile of loam flecked with white bits of fertilizer, strewn, strewn--the word itself difficult to say clearly with its single vowel.


Dale said...


Elizabeth said...

I think of this all the time, but never so concretely.

Your writing takes my breath away.

A said...

As a single mother, the disappearance that haunts me is my own, leaving my helpless daughter alone in this world.