Related articles and links |  1 of 3

In July 2000, Christianity Today published Nancy Guthrie's story, "Praying for Hope," which told how of how she and her husband, David, struggled with their daughter's genetic illness—and how they learned to pray for a child who was going to die.

Their story, of course, continued, and was also told in Time (free), USA Today, and other publications. Now Guthrie, who has worked in the Christian publishing industry for the last 18 years, tells the story and what she's learned from it in her latest book, Holding on to Hope (Tyndale).

A few weeks before the birth of Hope, there was a fire in your neighborhood. What happened that day?

I think it's the same question that all of us ask when we see something that we consider to be horrific or a tragedy. We look at it and we say, what would I do if that happened to me? That's what I thought about that day. What would I do if the house that I lived in had been destroyed by fire?

Two weeks later you gave birth to Hope and learned a couple of days after her birth that she had what's called Zellweger Syndrome.

It's a very rare metabolic disorder, and I had never heard of it before. It's what's called a paroxysomal disorder, which means is that in every cell of Hope's body she was missing what's called paroxysomes. The best way I know how to describe them is that they're like trash men. They take out the trash of the cells. And there's one kind of trash there especially important to take out, which is long-chain fatty acids.

On Hope's second day of life, the geneticist came to our room. They had a long list of small problems. She was very lethargic. She'd hardly even cried. She couldn't suck. She had clubbed feet. She had a real large soft spot. She didn't move much. Lots of small problems that add up to a larger problem. And that's when the geneticist told us that he felt she had Zellweger Syndrome. He explained that slowly the toxins would build up in her system and that her systems would slowly shut down. Most babies with that syndrome live less than six months.

What was that first day like?

My husband crawled in the hospital bed with me that night and we cried out to God and in the best way we knew how—it might not have been complete truth but we wanted it to be—we said, God, we trust you. But mostly we just felt enormous sadness.

What was so amazing is that the week the house burned down I had read the story of Job in Bible Study Fellowship. And when I read Job's story, I had the same experience: What would I do if that happened to me? Two things struck me. First, I was struck by the fact that Job was chosen, specifically, for this suffering. And it wasn't because he deserved to suffer, it's because he'd been so faithful to God. I figure for God to have chosen Job he must have over and over again been consistently faithful to God no matter what came into his life.

And so you concluded that both in the case of Job and in your case that there was meaning attached to suffering.

That's the promise of the gospel. And that's the only way we find any comfort in suffering. I think in some corners of the church, we are so focused on victory in Jesus and having faith that overcomes that we're not willing to just allow people to hurt deeply and just be sad. This is a broken world. It's a painful world to live in. When you lose something or someone you love, you grieve over that loss. Tears don't reflect a lack of faith. They're a reality of our humanness.

next page... |  1 of 3

September (Web-only) 2002, Vol. 46