I want to tell you why: I cried in your office; bought myself an expensive purse; don’t talk about the details of my life; smile a lot; give short, simple answers. It’s not because I have a son without eyes. It’s because you think someday he will: wear glasses, do puzzles, sit in a kindergarten, learn to read.
You told me a story, friend, of the boy born with water on the brain, who needs glasses, who walked when he was two (so late!), who talked finally at four (so late!), whom no one expected much of, but who now does fifty piece puzzles.
“From the inside out,” you said. “He starts in the middle, he examines each piece, he turns it this way and that. He makes a decision, he’s a savant.”
I looked at you, dear friend, and wondered, What am I supposed to gain from this? You love me, this I know, so perhaps you were thinking, I want my sunny pictures, doesn’t she?
You told me another story then, of the girl who could not see, or talk (“She was a preemie too,” you said), who lay about the rug of the classroom and made sounds and gestures no one could understand. Of the teacher who could not teach; of the students who could not reach her. “Her parents must not fight for everything she needs,” you said.
And what I thought, but did not say: With a child like that, there is no fighting. There is only living.
My son, you took: Topamax (seizures); Inderal (heart); Vigabatrin (seizures); Phenobarbitol (seizures); Demerol (pain); Ativan (pain); Lasix (lungs); Decadron (lungs). I took: Seconal (sleep); Ambien (sleep); Prozac, Wellbutrin, Celexa (depression); Ativan (sleep); Topamax (kicks).
“I gave him Ativan to help him sleep,” the nurse said. “I gave him Phenobarbitol so he won’t remember. I gave him his breathing treatment, he saturates so much better after the Albuterol, I gave him Tylenol.”
“Tylenol?” I asked. A child with scars across his body, a tube down his throat to help him breathe, one eye (at first) then no eyes (at last) and you gave him Tylenol? “Does Tylenol really apply?”
“Should I give him more Ativan? Morphine maybe?”
“Morphine sounds good,” I said.
I have brought you: into life; home from the hospital; to the heart doctor who said you would not live; to the eye doctor who would not look at me; to the neurologist who said you may look normal but could easily one day shrivel up into the cripple of the worst sort. “Like this,” he said, pretending to be Quasimodo.
Back to the hospital then. Into surgery rooms, CT scan rooms, MRI rooms, more hospital rooms, and home again. You are the same boy but different now: diagnosis, medicine.
The parts that don’t work: your eyes; your heart; your stomach; your mouth; your brain; your lungs.
The parts that do: your smile, your laugh.
I brought you home, took you to see grandparents (She will be traveling with a disabled child; she will need help), and to the grave where your sister is buried. I took you to soccer games, Brownie troop meetings, the park (on oxygen, a tank hoisted across my shoulder), more doctors’ offices. I took you to schools where I teach, to meet colleagues, to hear questions, “Will he ever see? Walk?”
Will he ever toss a ball, do a puzzle, turn the pages in a book?
I bring you to school like a roasted pig, hoisted above me for all to see. “Look, here’s Evan, Hi Evan! Good morning Evan!” I place you on the floor, beside a basket of toys. “Look Evan, here are your toys.” I put your hand on the basket, I move you to a toy. You pull back, you shake your head, you bend over into your pose, the one that says, “Nope, not now, no toys for me. Right now I want to stand upside down with my head on the ground, the feel of my hair on the rug.” I step back. I try not to make too much of this basket, these toys. Haven’t I brought you here for a reason? Aren’t you supposed to be here, to learn, to play?
My dear friend, can you picture the boy on the floor, laughing at his own joke? “Look at me,” he says. “I can’t see, I can’t talk, I can’t do puzzles. Maybe I never will. But I crack myself up, make jokes no one else understands. I know yoga poses: downward dog, bear, child’s pose, the lotus position, virasana.”
“Science is so amazing,” you say. “They can fix the parts that do not work, there are advances every day. Why just yesterday –”
“Yesterday is not today,” I say. Yesterday is not the day I brought my son to school where he is meant to dress himself, feed himself, walk to the playground, find the swing, climb the structure, sit on a chair without sliding off, hold a spoon, put food into his mouth. Chew, swallow, drink. Know his friends’ names.
Yesterday is of no use.
The boy with the glasses and the watery brain. My son.
Sometimes you don’t like something your whole life but you’re still meant to be here on earth. That is the beauty, the struggle, the true puzzle: fifty pieces and more, upside down, inside out, right side in.