If Toby had so much mucous, then why was it a better day?

Last week, when toby was still in the hospital, i came home to have dinner and spend the night with yoni. toby had been admitted for the second time in two weeks, he was neutropenic and his intestinal tract was lined with painful sores all the way from mouth to bottom.

i rarely have any one-on-one time with yoni and we certainly don't have a chance to catch up on standard teen topics (he's almost 15). instead, yoni asks me how toby is doing and i report back something like this: "he's better, honey. he had more energy today and could actually watch tv. he had 8 spoons of broth. he didn't cry that much. and he only threw up once when we gave him medicine. what did he throw up? oh, the broth and about a quart of mucous."

yoni was quiet for a moment and then made this brilliant statement: "If Toby had so much mucous, then why was it a better day?"

It took my breath away. I laughed and laughed at the truth of his words. From the mouths of babes indeed. perhaps unwittingly, yoni had arrived at something very deep: an attempt to understand the enormous shift in perspective that cancer has wrought upon our lives.

six weeks ago a scrape or tumble was cause for alarm. now i watch as toby endures daily pain that most of us cannot even begin to imagine.

cancer has robbed my child of his softness, his innocence, his curls, his ease, his strength, his body, his endurance. It has also revealed some remarkable things. I have a little boy who says “please” and “thank you” and “excuse me” as poisons drip into his bloodstream. I have a little boy who has rediscovered the love of his older brother, playing catch together for 20 minutes after being released from the hospital. I have a little boy who sits on the stoop with his cousins and tells them that he is about to change their bandages and give them shots that will hurt.

cancer makes the world outside the hospital seem unreal and soft at the edges. I stumble into the light after days and days on the 9th floor and I can’t understand what I see. Every person, every tree and house and street and interaction seems so vulnerable and beautiful that I want to cry. Did I live like this too, before april 17th? Did I notice that even Brooklyn looks like a thomas kinkade giclee reproduction?

cancer makes words like “brave” and “courage” sound ridiculous. sometimes, during a particularly painful procedure, the nurses say to toby, "you're being so brave!" or a friend will tell us how courageous we are. honestly i don't know what those words mean. Maybe they are placeholders for feelings that are much, much bigger and unwieldy. They’re safe words, but they aren’t really true. Here are the words that speak to me: fear, numbness, why, desperation, intense love, sadness, more fear, exhaustion, hope.

Our perspective has shifted and I find hope in strange places.

Toby threw up a quart of mucous, but he giggled when we tickled him under his arms.

The pale, skinny, hairless children at the hospital don’t look half-dead to me anymore. I can identify them, I can match them to their parents, seeing them day after day is enormously reassuring to me. The children look half-alive now.

I sometimes find it hard to look at healthy children. They are so beautiful. I cannot believe how much they climb and laugh and run and whirl around.

and this: The children at beansprouts are studying insects: the ladybug sheds her skin over and over again, each time revealing new skin underneath. One day she feels very tired. She stops eating and curls up. And then she waits. When her new skin grows hard, it splits and she climbs out of it one last time. She is very, very pale. She waits. Slowly, slowly, slowly her color grows stronger. Her black dots appear. She is a ladybug.

We love you all. Pray for Toby.

mooki and stephen