When God Hides His Face

In the land of Uz there lived a man whose name was Job. This man was blameless and upright; he feared God and shunned evil. He had seven sons and three daughters, and he owned 7,000 sheep, 3,000 camels. He was the greatest man among all the people of the East.
-- Book of Job

In a subdivision in Nashville, Tenn., live David and Nancy Guthrie. They own no sheep or camels, but they have a late-model Infiniti and a wide-screen Sony TV. They would never lay claim to blamelessness, but they are regarded as upright and God-fearing among their friends, who place high value on those traits. Sometimes those friends compare the Guthries to Job.

The odds of carrying a recessive gene for a terrible disorder called Zellweger Syndrome are 1 in 160. The odds of two carriers meeting and having a child who suffers from the syndrome are about 1 in 100,000. David and Nancy, already the parents of a healthy son, Matt, drew that 1 in 100,000 chance, when 2 1/2 years ago Nancy gave birth to a severely disabled daughter named Hope, who struggled with life for 199 days. After Hope was found to have the ailment, David got a vasectomy. The odds of a woman's becoming pregnant after her partner has had the procedure are roughly 1 in 2,000.

It is a warm, hazy day at the Harpeth Hills Memorial Gardens. Nancy, wearing a pink maternity suit, kneels down to wipe dirt from a plaque reading Hope Lauren Guthrie. A woman whose son lies nearby has hinted repeatedly that Hope's plot is due for a resodding. "I'm gonna have to tell her," says Nancy wearily. "You know what? We don't need to replant that grass because we're gonna dig it up again soon. We're gonna have this baby," she glances at her belly and then at the grave, "and we already know that's where he's gonna go."

Her new child is due on July 16. He will almost certainly be dead within a year.

Such a situation would call out to God regardless of the humans involved. But the language of faith is particularly apropos to the Guthries, who inhabit the center of progressive evangelical Christian thought. David is a vice president at Word Music, a Nashville Christian music power. Nancy is a publicist whose clients include inspirational author Max Lucado and Anne Graham Lotz, Billy Graham's preaching daughter. Their reaction to their dilemma--their "Christian witness"--presents a window into modern evangelicalism's approach to questions that obsessed Job's author 2,500 years ago.

At birth, Hope Guthrie had clubfeet; she would not suck. The doctor said, "There are a few little things we want to look at, but it's not Down's or anything." It was in fact far worse. Zellweger devastates essential bodies called peroxisomes in every cell. Zellweger newborns are severely brain-damaged, often blind and deaf, unable to take food orally.

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