Preparing to Leave

It is early morning in Harbin. I like this time, and always get up before 6:30 to have quiet for writing before the workers arrive, Steve awakens, and the day fragments into a thousand tasks for his treatment program, one after another.

This morning, I savor each step in my routine: waking beside Steve – hearing his breathing exactly synchronized with the respiratory patterning machine (that is whole point of the machine, timed to match his rate of breathing and make him breathe more deeply) – check his covers, gather my things and slip out of the room.

Each time, each last morning in Harbin, I can’t believe the final day has come.

We have a lot to do today. If Steve finishes two chapters in biology, he will have completed the entire section on cell biology! I am sure he can finish his novel today, and he has a letter he is writing to his pen pal, and comments on his report back to the Institutes in Philadelphia that guide his treatment.

Yesterday, when I told him I was working on the report, I asked if he wanted to write something to his advocate Rumiko. Immediately he was intent, and declared a definite yes with his finger on the communication card.

When it came to writing, he seemed hesitant. He wanted to tell her what he liked about his program, and he had questions. Which first? He held his finger poised above the FC card.

He wrote to Rumiko:

“I like both inclined floor and knee walking [Steve means doing both on the same day]. I believe I can crawl. I believe I can creep. I believe I can talk with Daddy.

“How do I feel my legs? Cold and hot helps me feel. I should do knee walking right after. After cold and hot, I can feel better for a short time.”

I was surprised. His gains and enthusiasm these last weeks have been for the intellectual work, where he is doing splendidly (and happy for it!), and he loves going outside – whether to the mountain forest or just behind our apartment complex. His physical program, after all our hopes and energy from March at the Institutes, seems rutted back where it was.

But when I watched him FC to Rumiko, I saw what was front and center for Steve. He wants to move, he believes he can, he wants to work.


Most evenings, when I don’t forget, and while Steve is tired and past the hard efforts of writing or math or biology, he and I look at the quite heavy book I found for him in America, “A Year in Art, A Treasure a Day.” Every day has its art reproduction, while the opposite page has a quote and room for writing.

Steve likes so much diversity among the paintings, traditional and modern, landscapes and classic stories and even still life. Often I ask him what he likes best in a painting, and he points to the textured sky, with white and blues (he loves blue), or more recently to the heart, the turning point of the composition.

We talk about the art.

Two nights ago, looking at a landscape by a German artist I had never heard of, Steve could spot the tiny church spire in the far distance but pointed for his favorite spot to the base of two shadowed trees in the far left foreground, their dark trunks and dark shadows over the ground framing the scene otherwise full of light. He did not point to any objects – not the sheep or farm people, or the cart piled high with hay or two white horses ready to pull the cart. He pointed to the space where dark of trees and their shadows drew our eyes and turned our eyes back and deep into the bright landscape.

That evening, he wrote for the opposite page, “I like this painting.”

And last night, in writing to his pen pal, he said, “I look at art every night with Daddy. Art shows me the beauty of life and helps me see how other people feel. I am glad you do art.”

This painting is open before me now, and his words written on the opposite page in my messy handwriting, and this apartment with workers arriving and chattering before they open Steve’s bedroom door. I hear Steve now, he has lots of sounds during his first hour. I will be remembering these moments tonight on the train to Beijing, and happy with how often Steve surprises me.