PenWomanShip

Something is wrong with Ellie's brain. After acquiring her first words at an unusually young age, my granddaughter has suddenly lapsed into seasons of silence. At times she stares coolly at the person talking to her or blankly into the distance.

"Say, 'Bye-bye, Ellie.'"

Nothing.

"Say, 'Bye-bye.'"

Her dark blueberry eyes stare back without expression.

We tell ourselves it's a phase, or she's stubborn or tired. But the haunting knowledge that something is wrong does not pass. Our anxiety increases as she grows, but her ability to grasp and express language does not. We have her hearing tested-"everything's fine"-and then have her evaluated for a development disability. "What an exceptionally sweet little girl! Clearly bright. Compensates amazingly well for her disability. The neurologist is likely to call it 'developmental delay with autistic tendencies'."

Autistic! How could that be? As soon as she was born, she gazed at faces, unusually engaged and engaging. I recall the night after her bath when she was snug in her footed pajamas.

"Just let me hold her one last time before I go," I said reaching for her before her bedtime nursing. Ellie clung to her mother and cried in protest. My daughter lay on the living room carpet, nursing her until Ellie was satisfied. Then Ellie crawled over to the sofa, reached up to me, nestled against my chest, and fell asleep. I stayed a long time.

She has memory. She reaches for what she wants. She snuggles. My granddaughter can't be autistic! Still, something is wrong.
Ellie begins Sensory Integration Therapy, vigorous swinging and spinning which effects the middle and inner ear and consequently language. Her language improves after the first session; but during the second one, she reacts to the energetic motion by staring hollowly at the therapist.

"Have her doctor order an EEG. She may be having seizures," the therapist advises.

My first husband, my daughter's dad, has epilepsy. And his mother perhaps. And a nephew when he was young.

I don't trust doctors. Well, some doctors, yes, but not every one. Not just because there's an MD-eity after their names. They saved my life. At least for awhile. At least for now. Fifteen years ago they removed cancer and my left breast. More recently they removed more cancer and my esophagus. But that doesn't mean they know everything. A doctor earns my trust by being more than a skilled technician. By listening well, taking time, and connecting with me as a whole body, mind and spirit, not just a disease to conquer.

And tests! They come at a higher cost than anyone is willing to acknowledge. The dyes, some radioactive, they've run through my body in order to search out tumors. The enemas and fasting before tests when I was anorexic, struggling to maintain every ounce after the esophagectomy. The substance they ordered me to swallow to determine why food wouldn't go down. Each of these, and more, mechanically prescribed. Disconnected from the person I am.

I can't let them treat Ellie like that.

I move through the day before her EEG emotionally paralyzed, my throat and chest bound in fear. I'm no good to my daughter who must follow the doctor's instructions to prepare Ellie.

"What! You have to refuse her requests for food and water for six hours before the test? Do they know how little she is?"
"And we can't let her sleep the night before," my daughter adds.

"But the test's not until two in the afternoon!" I don't want to yell, but I am. "She'll not have slept for . . . for thirty hours!"
And then I learn the rest, that they will put her to sleep for the beginning of the test-finally let her give in to her body-and then force her awake for the next part of their procedure.

"It's torture! Abuse!"

These aren't the words my daughter needs to hear from me, I know, but I can't shake my horror of Ellie's precious body in the hands of technicians who will do her harm in the name of good.

And I can't protect her.

I demand divine intervention. "Cure her! Don't make her suffer! Make her life easy." But my frantic pleas entangle me in tighter fear, and I search for that sea of wholeness and possibility where prayer brings peace.

Then without conscious thought, my mouth opens and out comes, "Loving Creator, let me choose You over fear." With those words, comes serenity and confidence.

I pray to a Loving Creator, not God, because the word God still attaches itself to the judgmental old man with a long white beard of my childhood. Newer, to me, visions of God, a female, even androgynous deity, doesn't respond to the name God. God the Mother, like God the Father, is limited by my experience with human parents. But a faceless energy, a force that does not speak my name, offers me little of what I want. Especially since my grim second cancer diagnosis, I long for contact a divinity who knows me, who assures me of a consciousness which will survive my death with me. This isn't just about Ellie.

Like a trusting zombie on the end of her daddy's hand, Ellie weaves down the hospital hallway to a small darkened room in the EEG department. As her daddy and I leave the room, her mama climbs on the hard treatment table with Ellie, lays with and cradles her in one arm while placing her other hand firmly on Ellie's head in the way that always puts her to sleep. From then on, I listen through the ice-white wall between us or watch on the flickering monitor in an adjacent closet-sized room or through a crack in the doorway.
Exhausted and jittery, Ellie begins to drift off, but the starch-coated technicians jar her awake with the pressure of gluing twenty electrodes to her head. Ellie screams, kicks, and pushes the technicians away as if for survival. They try to sedate her with medicine from a paper cup, but she buries her head and fights them off. Next they take off her diaper, turn her over, and insert a suppository in her rectum. They hold her down until its sedative has a chance to take affect.

Somehow, my daughter helps with all this, and through the wall I hear her voice trying to reassure Ellie that everything is all right. Ellie cries out for her daddy, and my daughter calls through the wall, "Bill!" with commanding alarm.

I don't know what I would do were I in my daughter's place. I wonder if I could give control of my child to hospital personnel. I'm afraid I would wrestle them to the ground if I saw them hurting her.

There was so much my mother didn't protect me from. And too much I couldn't protect my daughter from. The fierceness racing through my chest now rises out of generations of inadequate guardians. Even so, I am useless.

Ellie screams and wrestles for thirty minutes, then continues to rouse herself occasionally from the sleep her body can't fully resist. The next time I peek into the room, wires from electrodes glued to her blond curls protrude from strips of white cloth binding her entire skull. A white sheet wrapped tightly around her body restrains her.

Then the test is over, and technicians remove the electrodes and the glue which holds them to her hair. The restraining sheet is unwrapped. Bill carries Ellie out of the room, her wet head drooped over his shoulder, her legs dandling heavy down his torso. Tears spill over his eyes as he tells me, "Here's my little fighter."

I hear my daughter crying softly in the next room. And then a deep voice tells her the tests were negative, no sign of seizures. "Of course, an EEG is only fifty percent accurate at best," his voice adds.
Damned doctors!

That evening, my minister calls to ask how everything went, and when I report, "It was a nightmare," I add, "and I'll never fool myself again. Prayer doesn't work!"

Damn God!

The next afternoon, Ellie stays with me while my daughter goes to work. I watch her intently as she plays with the wagon full of stuffed animals I keep for her in the corner of my living room. She is like a butterfly at peace, wings breathing as it rests. We snuggle on the sofa more than usual, and she occasionally stares out the window across the courtyard as if still drowsy. I look for signs of damage. Is she shaken? Does she still trust me? Is her sweet disposition intact? I don't take my eyes off her.
We are sitting on the floor against the sofa, playing with boy and girl monkeys made from men's socks when a soft glow flutters above her head. The sun must have moved from behind a cloud, I think. Reds and golds flow around her like liquid light pouring through a prism.

Time and space evaporate and expand in the paradoxical way they do during Yoga meditation, but I haven't done Yoga for years, and my eyes are wide open.

I gaze at this child, as elegant and simple as a white hibiscus blossom wrapped in silken light. Her face and body are more palpable than ever, yet they pale in an inviolable sense of soul surrounding her. Then suddenly, immutable truths cascade before me.
Her life is more than the drama I see. Her life's purpose is to grow her soul.

I inhale and let the thoughts seep where they will. The edges of my mind and body release into something vast. Mystery opens wide and beckons me inside.

Ahh, and I, too, am more than the drama of this life. I, too, am growing soul which will survive death.

With that I choose a knowing beyond reason and fear.