AEGiS-Miami Herald: Going to war for a child who is dying Miami HeraldImportant note: Information in this article was accurate in 2003. The state of the art may have changed since the publication date.
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Going to war for a child who is dying

Miami Herald - Sunday, February 9, 2003
Connie Ogle, The Herald's book editor, cogle@herald.com


This is not the way the story is supposed to go.

Children aren't supposed to have AIDS. They're not supposed to scream in pain about ice picks stabbing up through their feet or endure beatings from equally sick parents or bleed helplessly from the rectum. They should be able to breathe. They should be able to live. And their caregivers are not supposed to turn to street drugs -- marijuana, then, inexorably, heroin -- to conquer the child's overwhelming pain when doctors and hospitals, caregivers of a more respectable sort, can do nothing.

The limited mindset of "White People Town," as Nasdijj calls it, demands a cringe at the thought of illegal drugs. Pot? Heroin? For a sick little boy? But if it were your child moaning in agony, wouldn't you turn to drugs? Wouldn't you want to provide relief "from the razor blades and the ice picks and the bad things that ate at him and took all of his energy away"?

And, yes, you would be afraid. "I was scared to death to do it. I had tried everything. But this. Let them put me in jail.

"I am not going to sit there and see my child sick and screaming with pain while everyone did absolutely nothing.

"Live with it.

"He could not live with it.

"Neither could I."

This is not a story you have heard before, because most writers couldn't tell it in exactly these terms, so achingly honest it takes your breath away. Nasdijj writes in a rhythmic, staccato shorthand that pulls and presses, and he even slips effortlessly into poetry, as if his emotions finally gave way as his story came to its end.

This writer with the odd name -- Nasdijj means "to become again" in Athabaskan, a family of Native American languages that includes Navajo -- grew up in sheep camps and on the reservation as the son of a white migrant worker and a Navajo woman, and he worked alchemy on a lifetime of suffering, turning a hard childhood into literary gold with his haunting debut memoir, The Blood Runs Like a River Through My Dreams.

In The Boy and His Dog Are Sleeping, he strikes deeper, straight at the heart. You wonder, as you read the story of Awee, his adopted 11-year-old Navajo son, how he stopped crying or shouting or raging at the unfairness of the boy's life long enough to get the words out.

"Why would anyone sane adopt a child with AIDS?" he asks rhetorically: "It isn't like that. Sane or insane." It was instead simple. Awee's father knew of Nasdijj's work teaching disabled children throughout the Southwest; maybe he even knew that Nasdijj had adopted a boy who died at 6 from fetal alcohol syndrome. Awee's parents had AIDS. Growing sicker, they could not care for the boy any longer. So the father asked Nasdijj to adopt Awee.

Nasdijj refused, then relented. "I want the mad ones," he writes. "The children mad enough to struggle and survive. I want the children who have seen war." And a war -- against illness, pain, fear, death -- is exactly what Nasdijj and Awee will fight.

But at its heart, The Boy and His Dog Are Sleeping is a love story, one that radically and defiantly redefines what a family is. Even so, Nasdijj does not hesitate to lash out at the insanity of modern medicine, from its rules that prohibit painkilling drugs for children with AIDS -- they might get addicted -- to the disorder and disasters that plague Native American hospitals. "I dare you to go to any Indian community and find a majority of Indian people who will say: Our community hospital is a modern, clean, technically proficient health care delivery system run by a government that cares for and about the Indian people it serves, and is connected to all the latest research and advances in medical and computer science," he writes. He doesn't take Awee to such hospitals. They go to White People Town hospitals, and they still have to fight.

Mostly, though, he writes about Awee, who loves to play baseball, listen to old stories about Navajo gods, ride on Nasdijj's old Harley. A motorcycle trip through New Mexico and Texas is another example of Nasdijj's disregard for traditional rules: "You have taken a child with AIDS, and put him on a motorcycle. You have taken him to the desert. It is heresy," he writes. "You're supposed to die softly in a nice cocoon." But Nasdijj wants Awee to live, to count the stars under a clear night sky, to hear his heart beat in the great dark silence of the desert. There will be enough time later for that nice cocoon.

There are those who will be outraged by Nasdijj's story, and I feel for them, especially those who live in places -- Florida, maybe -- that stridently seek to define what a family can and can't be. There are no such foolish artificial boundaries in The Boy and His Dog Are Sleeping. There is, instead, love and commitment. For Nasdijj, that's more than enough.

THE BOY AND THE DOG ARE SLEEPING. Nasdijj. Ballantine. 304 pages. $22.95.


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