After her daughter was born, Nancy [Guthrie] knew something was wrong. Though she named the baby Hope, there wasn't much to be hopeful about. Born with clubfeet, extreme lethargy, and an inability to suck, among other problems, Hope was officially diagnosed with Zeilweger Syndrome. This rare metabolic disorder is characterized by an absence of peroxisomes (cell structures that rid the body of toxic substances). There is no treatment or cure. Most babies with the disease live less than six months.

"At first, I thought it was my fault," says Nancy "that I didn't pray enough for a healthy baby and was now paying for it." Nancy was familiar with prayer. She grew up going to church, attended a Christian college, and had a great job in Christian publishing. Her life was filled with the pursuit of Christian things but as she later realized, not necessarily with the pursuit of Christ. "There was a sense of hypocrisy, you know? I was so busy for God and interested in theological things, working with Christian authors and books, and working hard at my church, but I wasn't talking to him or listening to him by reading his word …

"I think for those of us who have grown up in the church, it takes a miracle rescue touch from God to break out of going through the motions. It takes great humility to say 'What I've been doing hasn't been working, and it hasn't been real.'" Nancy began by telling God, "It's been so long since we've talked, and I don't even know how to do this or why you'd want to talk to me, but can we start talking?"

For Nancy, talking meant committing to regular Bible study. Slowly, she felt the hypocrisy being replaced by a hunger to know God more …

She considered a recent Bible study she had done on the Book of Job. At the time, she wondered if she could do what Job did. She recalled the passage where God said, "My servant Job will be faithful to me no matter what."

"I remember being so challenged by that," she says. "I couldn't imagine God ever having that confidence in me." As Nancy looked at Hope, she thought, Here's my chance to respond to the worst thing I can imagine in a way that is pleasing to God.

It wasn't easy. Nancy had to make that decision over and over again during the next few months. Her grieving didn't get easier. Hope wasn't healed. The pain didn't lessen. But each day, Nancy tried to respond faithfully despite her loneliness and grief. When people offered to drop off meals, she and David invited them to stay. When people expressed pity at their circumstances, she asked them to celebrate their daughter's life. "Whereas before we talked to our neighbors about our lawns, we never had meaningless conversations anymore. We were talking about life and death and Jesus in a way we never had before." In preparing for her own loss, Nancy began to help others.

On her 199th day of life, Hope took her last breath.

Both parents must be carriers of the recessive gene for Zeilweger Syndrome to occur. The Guthries decided David would have a vasectomy to prevent another pregnancy. Only one in 2,000 vasectomies fail, so the couple felt secure. But one year after Hope died, Nancy was pregnant again. Prenatal testing revealed their third child would also have Zeilweger Syndrome.

Time magazine interviewed Nancy and David for an article in which the writer compared their plight to that of Job's in the Old Testament. The article quotes an entry from Nancy's journal: "[Like Job], we often cannot see the hidden purposes of God," she wrote. "But we can determine to be faithful and keep walking toward Him in the darkness."

Named after the angel, Gabriel was born on July 16, 2001, the same day the Guthries' story appeared in Time. They knew what to expect. Their son's first day would be his best.

Gabriel died 183 days later.

Nancy says that answering how or why begins with another question: what? What do we believe about God? "Do I trust the character of God enough to believe he's in control and whatever he allows in my life will be for my ultimate good—not [that] whatever he allows in my life is good?" says Nancy. "Can I trust knowing him will be good enough to make whatever it cost me to know him worth it? A lot of people say, 'Oh, I could never do that.' And David and I say, 'You couldn't. But if God allows this in your life, he will also give to you the grace you need to respond to it faithfully.'"

"I've experienced one of the worst things that can happen," says Nancy, "and I haven't found I'm strong and I can handle it. But I have found out God's promise is true, his grace is sufficient. Now when I read 'My grace is sufficient' (2 Corinthians 12:9), I believe it not only because Jesus said it in the Bible—I believe it because I've experienced it."

Condensed from our sister publication Today's Christian , © 2007 Christianity Today International. For more articles like this, visit Today's Christian