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.
You're wrestling through tears and issues of gratitude and blame and suffering—and you now have a choice to make after Hope's death. Because of the genetic code, you know that you have a 25 percent chance of another child having Zellweger.
We didn't know that, of course, before Hope, but then we knew.
And you made a decision that you wanted another child?
Well, no. We decided that we couldn't take that risk. We just didn't feel like we could risk putting our son and our parents through such a sorrowful experience again. And so we made a choice and we took surgical steps to prevent a future pregnancy.
And then I found out I was pregnant about a year and a half later. And to say that we were shocked would be an understatement. But we weren't just shocked, we were afraid. We were afraid of what it would be like to love and lose another child.
But at the same time we felt this cautious sense of joy—we had 75 percent chance of having another healthy child. And then that same geneticist who had come into our room on Hope's second day of life and delivered that bitter news to us that she would live only a short time called and said the results are positive. This child will also have Zellweger Syndrome.
Was that day darker than any you'd previously had?
No, it wasn't. In those eight weeks between the time I learned that I was pregnant and got those test results, we did a lot of reckoning. As we waited for that phone call we prepared in a sense for the worst news. To be honest, the most profound sense we had was just a sense that the circumstances were so amazing. We just had this deep sense that God was at work. If he has allowed us to get pregnant, and if this is another child with Zellweger Syndrome, he must have something very significant he wants to do in and through us.
You chose the name Gabriel.
We chose the name thinking about the angel Gabriel, I think partly because every time Gabriel appeared in the Bible he reassured whoever he was speaking to, he said, don't be afraid. And to head into this a second time was scary.
During Gabe's life I studied each of those three times Gabriel appeared in. And the first was back in the Old Testament to Daniel. And he comes, you know, Daniel has had this dream and the angel Gabriel says, I've come to give you insight and understanding. And he revealed to them the future redemption of God's people, which includes the coming of The Anointed One, Jesus.
Then Gabriel comes to Zechariah in the temple to tell him that his wife is pregnant and that she'll have a son, John the Baptist. And then Gabriel comes again, of course, to Mary and tells her that she's going to give birth to the very son of God. And when I saw that I just see that Gabriel's message was always the same. It's Jesus.
Don't be afraid of the future. Jesus is coming.
Copyright © 2002 Christianity Today. Click for reprint information.
Visit DickStaub.com for audio and video of his radio program (4-7 p.m. PST), media reviews, and news on "where belief meets real life."; The full text of this interview will be for sale on the website soon.
Earlier Dick Staub Interviews include:
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Mike Yaconelli | The author of Messy Spirituality discusses God's "annoying love." (Aug. 6, 2002)
David Brooks | The Weekly Standard senior editor talks about the spiritual life of Bobos. (July 30, 2002)
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Thomas Moore | "To really live a secular life and enjoy it is part of being a religious person," says the author of Care of the Soul and The Soul's Religion (July 9, 2002)
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