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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.
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