"Holding onto Hope" has been described as a meditation on the Book of Job. In that story, God tests Job's faith to prove a point to Satan. Can't we see Job as an example of senseless suffering, almost a game?

Nancy: It wasn't at all a game. And certainly Job didn't see it as senseless. All along he believed there was a reason for his suffering, even though God didn't completely spell his purposes out. Job came to a place where he was able to submit to it. He recognized that part of God's character is that he's a redeemer.

So Job came out as a better person?

N: Amazingly enough--and with a life that can be described as good. One translation says "And Job died having lived a long, good life." I was like, really? That's not how I think about Job's life. But it's the truth.

Do you think your experience with Hope and Gabriel is part of your good life?

N: My life has been enriched and deepened by what I've experienced--and by how I've responded to it. Does that mean it was a good thing? I wouldn't go that far. But I would say God has used it for good in my life. There's a difference. I don't regret these past three or four years. There are days I wish Hope and Gabe were here and healthy, and that everything I learned from it-well, forget it. But I've been really blessed by what I've experienced, including my loss.

In the end Job says to God, thankfully, "You've revealed yourself to me." Why does God reveal himself in such remote and strange ways?

N: I'm not anywhere near smart enough to answer that. What I would say is, maybe you went on a road trip with someone, or worked on a project with them and slept on bunk beds for a week. After that, you feel really know that person. When we've done something difficult with someone, we know them in a more intimate way than we could just sitting on a patio drinking mai-tai's. Perhaps that's a way God reveals himself to us. He reveals himself in way he can't through comfort and ease.

As evangelical Christians, you believe in a personal, all-knowing God. Did God choose this experience for the two of you personally?

David: At some point you have to accept that if a loving God doesn't cause evil and harm, he must allow it. That's obvious. But when people ask did God do this, they are really asking, How can a loving God cause you to suffer so greatly?

I don't think this was a Job-like experience where God, sitting in heaven, said to Satan, let me show you how faithful the Guthries can be, let me visit this calamity on them. When a bird craps on my head, I don't say, "Okay, God gave me that to learn something." But I will confess that Nancy and I have often said, "God has called us to be faithful and desires for to learn and honor him by how we react to this whole thing."

N: We both have the recessive gene for this syndrome and face genetic odds that caused it to happen. By that we don't mean God was completely uninvolved, but it was very natural. A lot of suffering is the result of living in a broken, fallen world, with broken, fallen people experiencing the natural consequences of decisions we make and people all around us make.

These days we're told anger is an affirmative reaction. How have you dealt with anger?

N: I haven't. I'd like to say I had, so I could appease people who feel I should have. But I haven't. My most profound emotion has been disappointment.

Disappointed with God?

N: Just disappointed. Our culture, and specifically our Christian culture, has gotten so casual with God. We think of God as our friend, or Jesus as our helper. We're missing the sense of fear of God. That's not a fear of expressing your anger. It's a reverential awe that makes you so slow to point a finger of blame at God. It's a hand upturned, saying, "I don't get it! This doesn't seem fair. Show me, and help me." That's the big question mark for us when we suffer. Are we going to blame God, or are we not?

D: It's too simplistic to say, when we're going through something that hurts, that everything we believed in before doesn't seem to fit now. God's purposes may be hidden from us, but we're not going to wait until they're explained to our satisfaction before we do our best to embrace it and live it and even find meaning in it.

Many would feel if anyone had a right to terminate a pregancy, it would be you after you found out you were expecting a second child with Zellweger's. What was your approach to this issue?

N: Anybody who knew us when we had Hope knows how much we valued Hope's life. As painful as it was to lose her, they knew how much joy we had in having her. There's no way we would have wished it away. It was a real natural thing to say yes to Gabe. Were we afraid? Yes. Were we questioning? Yes. But we didn't want to take that into our hands and end that life.

I think women have been fed a lie that terminating a pregnancy ends the disruption of that event in their life. As I look back at Gabe's life, I look back with a lot of pain at what I went through. But I don't have to look back with any guilt, or shame, or regrets. And those are very painful things I think women who terminate a pregnancy have to live with.

D: People are born with all kinds of conditions. It's not our choice to make, what the minimum standard is of the quality or duration of life. God values all human life. We asked the medical people all we could about Hope's condition. Everyone of them explained that she was not suffering. It wasn't up to us to decide whether her life was fully worthwhile, or not worthwhile, or 50 percent worthwhile. We loved her with all our hearts. We were her parents. So as we went into that second pregnancy, we had this rich experience behind us. Even if we had felt it was our choice, I'm very certain we wouldn't have chosen to miss the experience to have Gabriel.

N: I know that sounds crazy. From a distance all people can see is the pain and suffering in Hope and Gabe's lives, and in losing them. They don't see the joy--there was just a lot of joy. We figured out very quickly that the significance of a life is not measured by its length or its contribution.

D: As parents we're often good to our little ones because it's important for their growth and development. Nancy and I knew that our child was never going to turn around and love us and thank us for all we'd done. But it gave us an opportunity to practice a love, to respect and honor the child, because the child created in God's image. That was an incredible, mysterious opportunity and I'm grateful for it.

How has your experience changed your relationship?

N: It's just bound us together in a way that I don't think we could ever be torn apart. I've seen him do some really hard things, painful things. And he's seen me make hard choices. And when you've suffered together, you have more of a capacity for joy. We're better about enjoying life richly and about choosing to celebrate life.

How would you tell someone to be thankful for what they have?

N: It's hard to tell someone who's hurting. I got an email from someone the other day from someone whose child had Zellweger, and I wanted to say be grateful for what you have. That seemed so insensitive. But it's freeing to realize that everything we have is God's. We hang onto to everything so tightfistedly. We find all of our security in that, and we don't want it to be taken away. There's a freedom in letting go and saying, It's all God's. It could all go tomorrow and I'll still trust him and believe he's good. Or he could add to it and I'd trust him and think he's good.

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