by Naomi

July 2, 2005

This poem is from one of my favorite books; one that I believe I've had since I was a senior in high school.  There are several wonderful poems, some joyful and some that I've never been able to read without crying.  Written so clearly, that I think it will help me describe one of the facets of Rett that I will always find overwhelming.
No, she's not lying down there now for love
With her knees drawn up, face sideways on the pillow,
And loose hair slopping over the edge of the bed.
Look, and you'll see the sunlight has gone out of it,
Brittle and dry as winter grass.  Not birth,
Not lust, not sleep makes her lie down like this.
There's growth in her still, another sort of intrusion
Into the body where a man's lust thrust,
A child grew, over whose skin a lover's hand
Moved gently, softly like water, sun or rain,
That body, probed by all the claims that pluck
And claw and pull and sap a woman's living.
Now the last claim has pushed her on this bed,
And will choke her breath and close her mouth, as once
A lover's kiss sealed, clogged the quivering tongue.
Yet my throat chokes with compassion, not for this,
But at the small, formal, housewife's smile, politely
Greeting the nurse like a guest on the doorstep, using
Light, inadequate words, and meeting death
Perhaps, with the same grave, sweet, pure courtesy,
Decorous courage; this not agony
Cuts to the human bone, is not to be borne.
O this, this, lovers alive on the hot bed
Struggling to the dark light, the burning centre, 
Remember it, and let, like rain, sun and water,
Tenderness move over your fragile bodies,
For you are lost, as she is, and alone. 
If you heard only Rett's half of any conversation about Ewings or chemotherapy or surgery or hospital stays or anything other than the absolute most extreme respiratory distress, you would never have known, realized or understood that having recurrent Ewings was terrifying, that chemotherapy had noxious side effects, that surgery was painful and difficult to recover from, , that staying in the hospital wasn't the most enjoyable way for a teen-ager to spend his time or that he ever had discomfort worth complaining about.  I don't know how Rett remained, at all times, from my vantage point, even, kind, cheerful and optimistic, patiently explaining to me that oral cyclophosphamide wasn't bad because the pills looked like breath mints or that he still enjoyed playing soccer with his friends because his skill and knowledge of the game, compensated for their having normal pulmonary function and teen-age exercise tolerance.  
Retracting a small section of the paragraph above, I do know something about how Rett came to be the magnificent person he was.  Charles, Dana and Anna, from everything I have seen and know, are very much like him.  Always gracious, always willing to look forward, never dwelling on the fear or sadness that would easily have crippled others.  Charles and Dana gave Rett the gift of independence, under extraordinarily difficult circumstances.  They allowed him to experiment with most of what drives young men and go off to MICA, even though they were terrified, watching him weaving instead of walking, under the influence of too many drugs and physical limitations.  They gave him the opportunity to live his life as openly and wildly as he chose; he did not live waiting to die. 
Clearly, Rett is in a better place.  As I think Rett and I discussed, years ago, I am not a religious person.  However, I do believe in physics and one of its fundamental principals is a simple one, "Energy is never created or destroyed. " Beyond any conceivable or inconceivable doubt, Rett was an energy.  Accordingly, though in a different form, he still exists, and will be able to interact with his friends and family in one way now, in another when someone joins him.  Until then, I have the deepest hope and belief that he will help Charles, Dana and Anna enjoy their time here, even knowing how hard it is to do so without him.
Thank you very, very much.  I am most grateful for the times I have had with Rett and with you.
Love,  Naomi