Why does a loving God allow people to suffer? It is sometimes those who have suffered the most who are most at peace with this question. David and Nancy Guthrie are such people.

In 1998, Nancy gave birth to the couple's second child, a daughter they named Hope. But within hours of her arrival, Hope was diagnosed with Zellweger syndrome, an extremely rare chromosomal disorder that is always fatal, usually within the first six months. There is no cure, no treatment. Neither is there much of what we call "quality of life." These babies are blind, probably deaf, unable to suck, coo, or respond in any intentional way. So the Guthries went home with a baby they knew would move closer to death with each passing day. Soon after she reached the six-month mark, Hope died in her sleep.

The odds of the Guthries having another child with Zellweger were one in four, so David underwent a vasectomy. Several months later, his wife came to him with the news that she was pregnant. Prenatal testing revealed the awful truth that this child, too, had the disease.

Gabriel Guthrie was born on July 16, 2001. He died in the arms of his dad one day shy of his six-month birthday. Two births, two dead children in the course of three years. It's more pain than most of us can comprehend. The experience led Nancy to write a book, Holding on to Hope (Tyndale), which uses the book of Job as a sort of primer on suffering.

How did you deal with the news that Gabe had Zellweger syndrome?

Nancy: For me, there was a clear sense of the sovereignty of God. It sounds strange, but I had a sense of anticipation. There is something thrilling in knowing that God is at work. God had to be up to something for this to happen. It reminded me of Genesis 45:8, where Joseph says to his brothers who had sold him into slavery, "It wasn't you who sent me here, but God." Joseph had a picture of the invisible hand of God behind the circumstances.

It was a very hard thing to tell our ten-year-old son, Matt, about the baby we were expecting. But we reminded him how Hope had added so much richness to our lives, and we knew and he knew that this baby would be a blessing, too. We don't regret receiving the gift of Gabe by any means.

David: One of the interesting things about babies with this disease it that it's easy to be peaceful in their presence. They are totally dependent. As parents, we see our children as they are, but also as who they'll become. We're always processing their future. Hope and Gabe were completely as they would be. We found ourselves embracing the mystery placed in these children by God. We weren't blind to the medical reality of the situation. These were not magical children. But there is a mystery of inestimable value in them.

The experiences we walked through with Hope have become a part of us, so in some ways, we are different people. The basic lesson through Hope's life and death for me was that I had spent most of my life avoiding the difficult, living in fear of suffering or tragedy. But the worst thing I could imagine happened to me and it didn't destroy me.

Your book is not so much about your own losses as about the nature and purpose of suffering. What do you think is missing in our understanding of suffering?

Nancy: The church today doesn't seem to have a prayer vocabulary for suffering. We only know how to pray for it to be taken away. When Hope was diagnosed, people in the church prayed for healing. Maybe it's the faithless part of us, but we didn't pray that way.

David: The nature of this disease is that every cell in the child's body is impacted. When we announced to our church that the baby Nancy was carrying had Zellweger's, there was almost a sense that, "Well, it was too late for Hope, but this baby is still being formed. There's still a chance God can heal this child." But at 14 weeks, when they did the testing, they could already see the deterioration in Gabe's organs. The disease was already taking effect.

Nancy: There's an inconsistency in the church. If a child is born with Down syndrome, people don't pray for that child to be healed. We believe that is the essence of that child. There are certain physical conditions that, in our experience, we've never seen God heal. It was hard for us knowing that there were people who thought we didn't have the faith to pray for our children to be healed. But, actually, I think it takes significant faith to say, "God, I trust you and I believe you are good even though I don't believe you are going to heal my child."

David: It's not that we don't believe God is capable of healing a baby with Zellweger. But he's never done it.

Nancy: I got an e-mail from a woman who told me she and her kids were praying for us. She said she was looking forward to showing her kids the miracles God can do.

David: What happens to those people and to their children when our babies die? Now they are left with questions about God's goodness.

Nancy: If healing is the only answer or the only pursuit, that's confusing. Matt came home from school one day and asked me if there was any chance Hope might live. "God can do anything," I told him, "but all I know is that the doctors have told us that there is no treatment and no cure and that there are no survivors."

We need to train our children to invite God into suffering, to ask for him to show us himself and show us who he wants us to be in the midst of our pain. I think about myself as a parent. I don't want Matt to tell me what he wants all the time. I love it when he just wants to talk. That's the heart of our Heavenly Parent. That's that kind of prayer life I want to have—where I'm having intimate conversations with God and asking him to reveal himself to me, not just telling him what I want or demanding that he act in the way I think he should. A woman in my Bible study told me she was going to pound on the doors of heaven for God to heal Gabe. That's not how I want Matt to talk to me—pounding me in pursuit of what he wants.

Do you ask the "why us?" question?

David: We live in a fallen world. There is grief, sorrow, pain, death, disappointment, but also joy and happiness. In his book, Reaching for the Invisible God (Zondervan), Philip Yancey writes about seeing interviews on Christian television following the Columbine disaster. Typically, they were joyful stories of how God miraculously spared some students from harm, or miraculously prevented some of the injured from dying. He says in the book that he couldn't help but wonder about how parents who lost children responded to these stories. Would they ask, "If God intentionally caused those children to be spared, does that mean he intentionally caused mine to be killed?" I choose to believe that it's our job to try to do what God asks us to do in this situation. We can't do anything about the why, but we can choose how to respond.

You're calling for a radical shift in the way Christians and our culture think about suffering—as something to be embraced, not prayed away. How do we begin that shift?

Nancy: I love the way Eugene Peterson translates 1 Peter 4:1-;2 in The Message. It says, "Since Jesus went through everything you're going through and more, learn to think like him. Think of your sufferings as a weaning from that old sinful habit of always expecting to get your own way."

When we recognize that God can uniquely use suffering to draw us to himself and to glorify himself, we're able to actually see it as an opportunity to come to know God in a way we haven't known him before, in a way we couldn't have known him without the suffering.

Carla Barnhill is the editor of Christian Parenting Today magazine.

Copyright © 2003 by the author or Christianity Today/Books & Culture magazine.
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