Bob: For every expectant father and mother, there is a hidden place in the heart where anxious thoughts reside. Is our baby going to be okay? Those anxious thoughts were realized for David and Nancy Guthrie when they first spoke with the doctor after the birth of their daughter, Hope.[ Read Full Transcript ]

David: In kind of hushed tones, he began to tell us that after doing some tests and evaluations, they believed that our daughter, Hope, was born, most likely, with a syndrome called Zellweger syndrome. Then, pretty quickly, he added "And unfortunately I need to tell you that for Zellweger syndrome there is no cure, and there is no treatment, and children born with the syndrome generally live less than a year."

Bob: This is FamilyLife Today for Tuesday, December 19th. Our host is the president of FamilyLife, Dennis Rainey, and I'm Bob Lepine. The kind of news from a doctor can shake your world and shake your faith. We'll hear how David and Nancy Guthrie dealt with that news on today's program. Stay with us.

And welcome to FamilyLife Today, thanks for joining us on the program. We're taking a hard look at a hard subject today, Dennis. It's the subject of suffering. Nothing does a better job of conforming us to the image of Christ, and nothing is more frightening to walk in the midst of, and that paradox is one of the great challenges, I think, of the Christian life, because who wants suffering, but who doesn't want to be like Jesus? And if the way to be like Jesus is through suffering, well, then, what do you really want, you know?

Dennis: Yeah, but it's – what we want is, we want the goal without the process. The Apostle Peter wrote in 1 Peter 5:10, he said, "And after you have suffered for a little while, the God of all grace who has called you to His eternal glory in Christ will Himself perfect, confirm, strengthen, and establish you."

That verse contains some great hope, and I think there is great hope in what we're going to talk about today as we interview the author of a book called "Holding On to Hope." Nancy Guthrie, along with her husband, David. Nancy, David, welcome back to FamilyLife Today.

Nancy: Thank you.

David: Thank you, Dennis.

Dennis: Nancy is a publicist, a good friend in the publishing industry. She and David have two sons and a daughter. David is a vice president of print music for Word Music in Nashville, Tennessee.

Yesterday you all shared a story about – well, it was kind of a life that was happily ever after. Life was as good as it could get. Things were going your way, and then in 1998 all of that changed when a little girl by the name of Hope was born.

Bob: As you shared with us yesterday, when Hope was born, the doctors immediately noticed some abnormalities. They quickly said there are some things we want to look into, but they were not specific. Where did it go from there, David?

David: In kind of hushed tones, and I know he was trying to be careful and concerned and kind to us, but he began to tell us that after doing some tests and evaluations, they believed that our daughter, Hope, was born, most likely, with a syndrome called Zellweger syndrome.

Bob: You'd never heard of that?

David: Never heard of it, so the name meant nothing to us. He said it's an extremely rare metabolic disorder. He might have given some more description about it but, honestly, I don't remember because then, pretty quickly, he added "And unfortunately I need to tell you that, for Zellweger syndrome, there is no cure, and there is no treatment, and children born with the syndrome generally live less than a year."

Dennis: At that point, Nancy, what occurred in your world?

Nancy: Well, I just felt like the air had been sucked out of me, and I remember just letting out a low groan and not hearing a whole lot after that, and he handed us two pages that he had Xeroxed out of the medical textbook, and I could see it had pictures of babies on it and lots of big words, and a lot more information than I could take in at the time. In fact, I didn't look at that sheet of paper for probably four or five days.

David did. It was – the list of all the things that were wrong with Hope was so long, I really couldn't take it in.

Dennis: After the doctors left, David, that had to be an incredible moment.

David: Yeah, it was one of those moments you hear people describe, and I'd heard people describe, you know, where everything is a bit of a blur, all of a sudden. There was a little bit more discussion after he gave us the initial suspicion that he had, and he said that we'll have to confirm this with tests. We're making an observation, and it seems consistent, and this is our strong belief, at this point, that Hope has this syndrome. We'll do some tests, and we'll confirm it. It will take, perhaps, a couple of weeks to get the results of the tests back.

We did ask a few questions. Again, I don't remember a lot of them, but he began to tell us some of the variations that were possible with this syndrome, but we got the basic news, and that was the stunning news that this beautiful little girl that we had been getting to know for almost two days now was hopelessly flawed and would not live very long.

Nancy: But it wasn't just that she wouldn't live. He explained to us that basically she was missing a subcellular particle that you and I have in each one of our cells called peroxisomes, and peroxisomes are kind of like the trash men in the cells. They take out the trash, and they take out the specific trash of long chain fatty acids. And because there were no peroxisomes, there was no one to take out that trash in her cells, and so he explained to us that slowly those toxins would build up in her cells, and her systems would shut down.

And the other aspects of the syndrome were mind-boggling to us. He told us that, likely, she wouldn't be able to hear; that she probably couldn't see; that she was severely mentally retarded; that she would likely develop seizures; and that death would most likely come because of respiratory distress.

And we already knew, at that point, that she wasn't able to suck, and so we had begun that day feeding her with a tube, and so we knew that would be the way we would have to feed her during the duration of her life.

Bob: David, when I have faced news like that, but I've never faced anything that catastrophic, but anytime I've gotten that kind of news, there's a part of me that just goes to immediate "This can't be happening." It's like, "I'm going to wake up, and this is all going to be over." You know, it's denial syndrome that kicks in. Did you go there first?

David: Yes, as that door swung closed behind the doctors, it was a surreal situation, because right outside the door was gathered all our family, and we could hear them making noise, and everybody was having a good time. It was just Nancy and I now in the room with the echoes of the doctor's words still knocking around the room. We were silent.

We looked at each other, we instantly began to cry, and I just crawled up on the bed with Nancy, and I think that our first words were not, "Let us pray," but I think our first words were "God help us."

Dennis: When we're hit with news like this, it demands a faith and a trust that you don't just conjure up at the moment. It takes a lifetime of growth spiritually to be ready for that moment.

In Job, chapter 1, verse 21, he makes the profound statement, as the bad news comes to him, "I came naked from my mother's womb, and I will be stripped of everything when I die. The Lord gave me everything I had, and the Lord has taken it away. Praise the name of the Lord."

One of the things you write in your book, Nancy, that I wanted to ask you – you said, "When a thorn pricks the flesh, it brings forth blood because that's what's in the flesh. When a thorn of life pricks a man or a woman of God, you say it is to bring forth" ...

Nancy: Well, it brings for what's inside, and what we see in Job, what came out when he was not just pricked but pierced, was worship.

Dennis: Gratitude, praise to God. How long was it in your life before that worship expressed itself?

Nancy: Well, you know, amazingly enough, about two weeks before Hope was born, I'd studied Job, and it had affected me profoundly. I came away with two things I noticed most. First of all, I noticed that Job had been chosen specifically to suffer because of his history of faithfulness. When God was looking for someone who would be faithful to Him no matter what, He says to Satan, "Have you observed my servant, Job?"

And when I read that I thought to myself, "Could I become so consistently faithful to God that I would come to His mind; that He would say, "Have you observed my servant, Nancy? She'll be faithful to me no matter what."

But the other thing I noticed was just what you pointed out – that Job's first response to incredible suffering and loss was worship, and I looked at that, and I thought, "How could he do that?" And I wondered, "Could I do that?" And I feel, in many ways, that was preparing me for that morning after when I woke up, and I realized what we had heard the night before was not a dream.

And it came to me – I thought of Job and of that challenging example I saw of a response to incredible suffering, and when my pastor came that morning, I looked at him, and I said, "Well, Charles, I guess here is where the rubber meets the road, isn't it? And here is where I find out if I really believe what I say I believe."

And I felt, at that moment, that I had an incredible opportunity to respond to what God had allowed into my life with trust and obedience. And I began that day to set out to do that, to please Him primarily in how I responded to incredible loss.

Dennis: And so would you say the next morning you began that process?

Nancy: For me, I did. I felt immediately that I had to look at it through those eyes, through that perspective of faith, and recognize that I had an opportunity to respond in a way I could please God.

Dennis: Nancy, there are people listening to us right now, and they're going, "This sounds absurd." Why should that be our response, Nancy?

Nancy: Well, one passage that has really helped me with that comes out of 1 Peter, chapter 1, where Peter is talking about suffering and trials, and he says, "In them you greatly rejoice even though now, for a little while, it's necessary. You've been distressed by various trials. That the proof of your faith being more precious than gold, which is perishable, even though tested by fire, may be found to result in praise and glory and honor and revelation of Jesus Christ."

And, you know, it's in those moments of difficulty we have the opportunity to show that our faith is real. That's where it shows what's really inside. It's like we step on a platform, and a curtain is opened, and what's really inside is revealed. We can't hide it at that moment.

And so the only way we're prepared when that curtain is opened, to reveal the glory of God, is if we're walking with God, getting to know Him, filling our minds with His Word on the ordinary days when there's no hurt or tragedy driving us to Him.

Lots of people will ask me, "How have you done this?" And I point to the parable that Jesus told about the wise builder and the foolish builder. Do you remember?

Dennis: Sure.

Nancy: He talks about the wise builder, and I remember after this happened, going back and saying, "What was the difference? What was the difference between the wise builder and the foolish builder?" And when you read that story, both of them heard the Word of God. They both talked about hearing the Word, but the difference was, on the wise builder, it says – I love how Eugene Peterson paraphrases this in the message. He says, "He worked those words into his life."

The storm came to both, but the wise man, because he had worked those words into his life, he had not only read Scripture or heard sermons, he'd worked in his life, he had changed from it, he had repented. He had conformed his character to what God wanted, and so when the storm came, he wasn't crushed by it.

And, in my life, I had decided, even though I've been in church all my life, that wasn't enough. I needed to work His words into my life, and I began a very serious and consistent study of the Word. And I would have to say to you, there was a sense in which I felt I was preparing myself for something, that I didn't know what it was.

But you know what? When the storm came, I wasn't destroyed by it, and it wasn't because I'm a strong person, it was because I had worked those words into my life.

Bob: David, after the doctor had given you this news, the next time the nurses brought Hope, and you took her in your arms, and you looked at her, and you stroked her hair, you thought, "You won't hear, and you won't see," and I can't imagine taking her in my arms without weeping almost every time from that point on.

David: Yeah, I think that if you had told me in advance that our daughter would have all of these things going on in her body, and if you described all that list of symptoms and the things that she would not be able to do, in all honesty, I think that my expectation would have been that it would be very hard to get very attached to a little baby that was that faulty in so many ways.

But the truth is, that we became instantly so attached to her. We knew we would have precious few days and months and hours with her, for one thing, and we knew that she desperately needed us. We were going to be everything. That's true for any baby, but somehow it seemed more real to us, and yet she was sweet, she was calm, she was instantly adorable.

So, yes, our hearts were broken by the news that we heard and, in a way, our hearts were broken every time we held her, every time we looked down at her, because there was this – there was always, throughout her life, a constant reminder that she would not be here very long.

And yet, most of our recollections, most of our memories of holding Hope are joyful memories. Hope was with us for 199 days, just over six months. You know, again, we had a – if you look at it this way, we had a unique privilege that most of us don't have in life, and that was that we had an understanding from the second day of her life that she wouldn't be here very long, and we knew about what the span of her life was likely to be. And since we knew it would be so short, we took every advantage we had to make the most of every moment that we had with her.

I've got to tell you, it was a joyful, joyful 199 days, although the bittersweet reality was always there, that we'd be saying goodbye so quickly.

Nancy: It's really a thrill to live life with an attitude of "I'm going to live these days in a way that I won't have any regrets." And that was part of our goal with Hope. We wanted to deeply, richly love her and enjoy her for the time we had her, partly so that when she was gone we would have regrets over those days with her.

Dennis: We're looking at a picture here on our table, Bob, that is a picture of their son, Matt, holding Hope, and I'm going to ask you all if I can put them on a website so our listeners can ...

Nancy: Isn't she beautiful?

Dennis: You know, she really is, and I want, Bob, our listeners to see a picture of Hope. I think they need to take a look at a beautiful little girl.

You know, when I was preparing and praying and thinking about talking with you, Nancy and David, I thought about people who are having difficulty in their marriage, people who have difficulty with a child, people who have health issues, others who have lost jobs, extended family issues – I mean, life is full of circumstances and, Bob, Nancy's book, "Holding On to Hope," has a byline – "A Pathway Through Suffering to the Heart of God."

Suffering that you are going through today can be a pathway that leads you to the heart of God, or it can lead you to harden your heart. The question is, what's your response going to be? Are you going to respond in faith as Job did and as Nancy and David have responded, or will you respond with bitterness, anger, resentment?

So I reject God and His plan for my life. Now I am left with guess whose plan – my own. Talk about hopelessness.

Bob: Well, and none of us knows how far down the road it will be when a thorn will appear, and we will find ourselves scratched, and what will come out of us at that point, it is what we are building into our lives at this moment that will be the reservoir from which we draw when those thorns appear.

Dennis: And I don't normally say this at this point, but the thing that I would encourage you to do, whether you're in the midst of suffering or whether things are going well, is to get Nancy's book and to read this. It may give you the perspective to help a friend, to coach a child, to encourage your spouse, or it may bring the comfort that you're looking for in your life.

Bob: Well, and when you're talking about getting Nancy's book, you're talking about "Holding On to Hope," of course, since that book came out, Nancy has written a book called "The One Year Book of Hope," that is a devotional. It's very well done, Nancy.

Nancy: Thank you.

Bob: It offers daily help for those who are grieving over a loss, whether it's a loss of a child or loss of a spouse, loss of a close relative – any sense of loss, you can read through this book, and it offers daily counsel, a daily way to steer your heart in the right direction.

We have both of these books in our FamilyLife Resource Center, and any of our listeners who want to get a copy of both books, we can send along at no additional cost the CD audio of our conversation this week with David and Nancy Guthrie, and you can review that yourself, or you can pass it along to another person who might benefit from listening to these interviews.

Again, we have the books and the CDs on our website at FamilyLife.com. If you go to the home page, in the center of the home page, you'll see a red button that says "Go." You click that button, it will take you right to a page where you can get more information about the resources that are available from us here at FamilyLife, additional help that is available, and you can also order online, if you'd like.

Or you can call 1-800-FLTODAY to request these resources. Once again, the website is FamilyLife.com, click the red "Go" button to go to the page where you can order the resources, or call 1-800-358-6329. That's 1-800-F-as-in-family, L-as-in-life, and then the word TODAY.

We're excited here at FamilyLife because we have had a number of our listeners over the last couple of weeks who have been calling us since we announced the news about the matching gift that has been made available to us here at FamilyLife during the month of December.

When you make a donation of any amount to the ministry of FamilyLife and, by the way, we're a nonprofit organization, we depend on those donations to continue all that we're doing here. Those donations are also tax-deductible. But when you make a donation, that donation is effectively double this month, thanks to the generosity of a handful of families who have come along to say we believe in what God's doing through the ministry, and we want to challenge others to stand with us and help support the ministry of FamilyLife Today.

So any donation we receive during December is going to be matched dollar-for-dollar up to a total of $500,000, and that is great news for us. Even more exciting than that is the number of you who have already called in and made a donation or have gone online to make a donation. We still need to hear from more folks in order to take full advantage of this matching gift opportunity, so if you are able to go to our website, FamilyLife.com, and make a donation, or call 1-800-FLTODAY and make a donation over the phone, let us hear from you.

Again, our website is FamilyLife.com, and the number is 1-800-FLTODAY. We hope that you'll not only get in touch with us, but we also want to ask you to pray with us that God will enable us to take full advantage of this generous matching gift opportunity here during the month of December.

Well, tomorrow we are going to hear from David and Nancy Guthrie about the short life of Hope Guthrie, and I hope you can be back with us for that.

I want to thank our engineer today, Keith Lynch, and our entire broadcast production team. On behalf of our host, Dennis Rainey, I'm Bob Lepine. We'll see you back next time for another edition of FamilyLife Today.

FamilyLife Today is a production of FamilyLife of Little Rock, Arkansas, a ministry of Campus Crusade for Christ.