The words on the page of the letter made the decision tangible. Yesterday, they were just words I uttered through tears over the phone. Little details, clothes packed away, toys in boxes, and memories playing over and over though my head, made the decision more real. I walked up the stairs to the attic. The boxes, ten years worth of letters and records from doctors and schools and therapists, made the decision more understandable, in my mind if not my heart. In exactly two weeks, our lives will be different. My boy is leaving.

Oh, of course we’ll see him again often enough. He’ll come home some weekends, and I’ll visit him at school. But, he will no longer live with us here in our house in Framingham.

It would not help to defend myself as a mother at this point. Either you understand the wrenching choice, or you don’t. It is not a decision I made easily, or quickly. Indeed, the proposal had been made three years ago, by a behavioral specialist who worked in our home. It has taken a few injuries for me to consider it. Strangers bitten, therapists leaving the job after hurting their backs… The days I spent unable to walk after trying to lift him were over a year ago, yet I look for some sort of way to explain how hard it has been. Sleepless nights? The scratches on my arm? His room is a wreck, drywall falling where he has banged his head, windows broken, contents of drawers and closets scattered in nighttime frolics. His frolics, not mine or anyone else’s. And the price paid by his brother and sisters? Sure, they love him, but they have given so much, learned so much so early. How about my ten-year-old son? It is for him that I know I have to do this. I can damn the world we live in, but at least for now, it feels like the only chance he has to move forward and really learn the daily living skills that will make his life better as an adult. His life could be better. That, at least, gives me some consolation.

But then there are the joys I will miss. My boy laughs from deep in his belly. When he is truly happy and seems to know I understood him, he beams, and holds me tight for a hug that feels like forever. Amidst social service budget cuts and reason for pessimism, this kid inspires generosity, patience, and tolerance. They have been lessons for all of us. The world slows down, and the essential things become clearer, the judgments less harsh, the pleasures more sublime.

I was inspired in my own work and life by my son and the people who have helped him, and by the people who have helped me. It is a world that was so foreign to me when I was younger. I was afraid of it. In working on policy around disability, I see the range of people who are perceived as limited by what their bodies let them have. And yet, what remains is the spirit. It sometimes astounds me. It all seems normal to me now, more normal, in fact, than the perfect health we hope to attain or maintain. Is this not the human condition? I think of accessibility, acceptance, and love, and I leave you tonight with this:

The Poems of Our Climate
by Wallace Stevens

I
Clear water in a brilliant bowl,
Pink and white carnations. The light
In the room more like a snowy air,
Reflecting snow. A newly-fallen snow
At the end of winter when afternoons return.
Pink and white carnations–one desires
So much more than that. The day itself
Is simplified: a bowl of white,
Cold, a cold porcelain, low and round,
With nothing more than the carnations there.

II
Say even that this complete simplicity
Stripped one of all one’s torments, concealed
The evilly compounded, vital I
And made it fresh in a world of white,
A world of clear water, brilliant-edged,
Still one would want more, one would need more,
More than a world of white and snowy scents.

III
There would still remain the never-resting mind,
So that one would want to escape, come back
To what had been so long composed.
The imperfect is our paradise.
Note that, in this bitterness, delight,
Since the imperfect is so hot in us,
Lies in flawed words and stubborn sounds.