We sat talking to the grandmother of another child with brain damage. All of us waiting to see the pediatric neurologist, crowded in the small waiting room.
“Its busy in here today.” She said to us.
“Well, we got our appointment time wrong—we’re not suppose to be here till 2:20 but they said they’d try to fit us in.” I told her, sharing more information than needed as usual. “Have you been coming here for a while?’ I asked the woman who held her grandson up so he could play with Elias.
“For the past seventeen months,” she said with a sigh.
She goes on to tell me that the boy’s Dad almost killed him, that he spent two weeks in a coma, that when he woke up he suffered seizures, that he couldn’t do anything, and that his ability to sit up now is a miracle.
The boy turns four in June.
And I don’t know the boy’s father but I could kill him, that is, if I had it in me to do anything with anger but cry. I want to shout: How dare you? Who do you think you are? You are a grown man and he’s a two year-old child, a baby, your own son?!?
And yet I’ve heard this story before—we all know it too well. The nightly news, a neighbor’s whisper, the missing child. The twisted imbalance of power that plays out not just in families but in corporations, governments, and countries again and again and again.
My own country guilty as charged.
Nineteen years. A long time to wait. But that’s how long the plaintiffs, mostly fishermen, have waited for compensation from Exxon Mobil for the oil spill that forever changed their way of life. Beyond livelihood, they lost their culture. They lost the ability to pass on the tradition of fishing to their children. They lost security. Retirement. Recreation. Faith in the return of a small fish.
And faith in justice served for the oil spilled—11 million gallons in Prince William Sound. The largest oil spill in US history.
Nineteen years.
8,000 of the 30,000 plus plaintiffs have died before ever seeing closure in this case.
A case that appears before the Supreme Court today after years of Exxon appeals.
And here’s the thing, the 2.5 billion in damages that the fishermen seek as compensation for the destruction of their way of life, for over 1,000 miles of coastline damaged by oil, for the Herring run that never returned, the sea-life killed, is equivalent to a mere three weeks profit for Exxon Mobil. Three weeks.
Nineteen years.
It’s estimated that Exxon Mobil earned 40.6 billion in profits last year alone.
How can the giant not bend his head, just slightly, to let the anglers breathe?
“He was perfectly normal before this,” she says to me, “And now he has to relearn everything. He’s like a newborn baby.”
As we talk I realize she’s not bitter, not angry, just tired.
She plans on adopting him and we talk about how our houses aren’t accessible, how you don’t think about the barrier of three stairs to the bedroom or a bathroom too small for a walker until you find yourself wondering how to make it all work for a child with special needs. Until your life plans turn off the main highway to a back road with unexpected curves.
She certainly didn’t plan on parenting a four-year-old boy. With brain damage. Who is not even her own blood. During her senior years. But she sat next to me in the waiting room helping him play with the same wooden beads that Elias pushed across the colorful wires, talking about the wonders of therapy and of watching our boys learn.
“They sure do teach you about joy,” she said as she stroked her grandson’s brown hair. “I use to worry about so many small things, things I don’t even think about now.”
“I know exactly what you mean,” I said.
Joy surprises me with its tenacity; it’s ability to cling to the edges of dark tunnels, offering unexpected light at the strangest of times. Like the morning of your premature son’s brain surgery. Or in the wake of a miscarriage. Joy shows up uninvited, all off-kilter and crazed and for a moment you know you’ve never felt more alive.
Joy slinks in unexpected on quiet days too when your most momentous task is taking a hot shower or picking up board-books from the living room floor. There it is, that orange feeling again, compelling you to stop and take it all in, the beauty, the love, the magic of this life of yours.
Joy circles Elias, moves inside him, and settles in his heart--lulling me into laughter, deep rich belly laughter, even on the days my eyes show the red telltale streaks of tears.
I know some people with “normal” children pity me when they view us from the outside. Oh, that poor woman with the crippled child, the blind child, the slow child, the small child, the damaged child, the handicapped child, the special child, you know, the one with the walker. “I could never do it,” they say.
I don’t care if it’s a boy or a girl as long as it's healthy.
And it's because they don’t know about the over-abundance of joy that comes not despite of but because of the challenges.
I don’t say this to gloss over the pain. Believe me (and if you’re a regular reader you know), I trudge through puddles of grief, an oily mix of sorrow, frustration, anger, denial, envy and fear, often. But because I do not side step these puddles but walk right through them, greasy knees and all, I find dry spaces of light where the world balances easily on my fingertip. And the sound of it spinning rings of pure delight.
Pure joy.
If only the giants of the world knew this secret, that sometimes you gain more when you loosen your grip, when you take off your power hat, get your pants dirty, and listen to the cries of a two year old child, or the call of a sea bird, or the voices of men and women who want nothing more than to fish.
*****
(Edited to add: The Supreme Court chose to support corporations over people. They merely asked Goliath to shake a few pennies out of his over-stuffed pockets, a symbolic gesture, one that hurt more than it healed.)
--Excerpted from Following Elias, originally published on Parents.com. Copyright 2009 by Meredith Corporation. All rights reserved. Reprinted with permission.