*Said gloriously by Toby, as we hurtled down the service road under the highway, passing rusty playgrounds and sand piles, barricades and the backs of buildings. 6 pm, Thursday, on our way home.
And as the car got closer, sharing Court street with bicyclists and strollers, he said, “I’d like to spend a little time outside, mommy, and maybe after dinner we can go to that store for an orange-cream ice.” And then we arrived and he skipped across the threshold, delighting in each doorknob and light switch. And Randy’s cd was loaded and toby danced. And laughed.
And there were two strawberries and a pickle and three forkfuls of diced macaroni and cheese. And a bath and two stories. And chatter. And we saw that life is good.
This is how toby falls asleep:
He turns on his side, extends his arm under his head, to reduce the weight on his neck, he sighs and then he whispers, “ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen.”
This is how toby meditates when he feels pain:
“Toby, if you could have your very own elevator, what would it look like?”
“It would have bright green doors on the outside and when it opened, the inside would be pink and furry. And there would be music. And stars on the top. And it would go to all the floors.”
This is one thing that Toby did two weeks ago:
We met with a nurse-practioner on the last day of chemo cycle 4, after Toby’s sodium levels were found to be dangerously low. I asked Angela why Toby’s fluids couldn’t be upped to the 9% sodium bags instead of the standard 5% sodium solution. Angela explained that high levels of sodium were also dangerous. She said, “When levels are too high, he might hold onto too much liquid. We need him to be able to release extra fluid, not hold onto it.” Toby was quietly inspecting the photos on the back wall. As we left the room and started down the long hall towards the elevator bank, Stephen and I noticed that toby was walking very slowly, without holding onto his IV pole or our hands. He seemed a little shaky and so I bent down in front of him and asked him if he didn’t want to use his pole buddy as a support. His lower lip quivered as he said, “No mommy, I don’t want to hold onto anything because then my sodium levels will be too high.” And then we saw the tears rolling quietly down his little face.
My sweet Toby, who chants numbers in his sleep and charms the medical teams on their rounds, who laughs at fart sounds and can remember the lyrics to every song he’s ever heard… Toby, who can speak in a southern drawl, just for effect… Toby, child of mine, your daddy and I talk about you when you’re asleep and we repeat the amazing things you say and we laugh and shake our heads at the wonder of you. Welcome home sweetheart.
Ed Clark, Christmas Guest
11 months ago