Thursday, July 19, 2007

“It’s so beautiful here”*

*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.

Love, mommy


LindaSueBuhl said...

Home is good - Toby continues to be a fighter and sees beauty in all the places we forget to look. Sleep well little Toby - and enjoy those home meals! Sending up a prayer and smile - for your healing and strength.

Anonymous said...

Yes, indeed! Welcome home, Toby! Orange-cream ice, strawberries, city sights, music, dancing, pickles, light switches…party down!

Wishing you more laughter and threshold-crossing today,

Nancy W.

Anonymous said...

Wonderful Toby! May you have a truly peaceful shabbat at home with your family.

Anonymous said...

For some reason, this post touched me unlike all the others, and they have ALL touched me, my heart, my soul, my mind, and my spirit. I think it is because those of us who do not know Toby got to see into his beautiful, wonderous mind in this post, Mookie, and it is a true delight. What a gem that little boy is. We pray for you every day, and like others have posted, I, too, check the blog morning and night- I feel connected to your family although I do not know you. I hope you feel the support of every single person who reads your beautiful words.Shabbat Shalom.

Anonymous said...

Dear Steve and Mooki, It's all about savoring every minute of your life together, every precious
word and reaction of your dear little Toby, isn't it? And by keeping this diary, you're recording your family history- what a wonderful document. Thank you for sharing such intimate moments with all of us who love
you dearly. Aunt Blanche & Uncle John

Taty said...

Hi Mooki and Steve
I still cannot help but cry everytime I read this post. Cry because the world through the eyes of Toby is still so beautiful, throughout this whole thing and in admiration for the fact that you have chosen to witness the miracle of a good day with so much love and appreciation. Many more magical days will come....