Bob: From the day that Hope Guthrie was born, her parents, David and Nancy, knew that, apart from a miracle, her days on earth would be short, probably less than a year. Within six months, Hope was gone.

David: We had Hope in a crib just a few feet from our bed the whole time that she was with us, and typically I would get up during the night and – at that point, we didn't talk about it a lot, but we had a sense that we were coming pretty close. But I walked over and just touched her leg, and felt that it was too cool, and so I knew at that point she's gone.[ Read Full Transcript ]

Bob: This is FamilyLife Today for Wednesday, December 20th. Our host is the president of FamilyLife, Dennis Rainey, and I'm Bob Lepine. We will hear today how David and Nancy Guthrie found strength as they held onto Hope.

And welcome to FamilyLife Today, thanks for joining us. I remember having a conversation one time with Mary Ann, Dennis, where we were just being kind of gut-level honest with one another, and I said to her, "You know, if you were going through a period of suffering in your life," I said, "that would be hard for me. But if I were to have to watch one of my children suffer," I said, "You're a grownup, and I figure you can deal with it differently," you know? But to watch a helpless child suffer, I thought, I don't know what I would do with that.

Yesterday and the day before, we were introduced to a couple who had that experience on two occasions with two of their children.

Dennis: That's right. We've been talking to Nancy and David Guthrie. Nancy, David, welcome back to FamilyLife Today.

Nancy: Thank you.

Dennis: And Nancy has written a book called "Holding On to Hope," and it's about the very thing, Bob, you've been talking about. It's about watching a helpless child literally slowly die over a period of less than a year.

Bob: Your daughter, Hope, was born in early December, is that right?

Nancy: Late November.

Bob: Late November of 1998, and the diagnosis from the doctors within days was that she had a rare syndrome called Zellweger syndrome, which, in an ultimate sense, it meant that she would, as Dennis said, live for less than a year, and that her systems over that time would begin shutting down.

You had no idea prior to her birth that there was any abnormality, did you?

Nancy: No.

Dennis: In fact, comment on the probabilities of this syndrome occurring.

Nancy: Well, it's a bit mysterious because, truly, they don't count that high in terms of the odds. Basically, for a syndrome to be considered rare, there has to be occurrence less than 1 in 100,000, and they kind of quit counting there. And so that's the number they've given us that Zellweger is very rare, occurring less than 1 in 100,000 births.

Dennis: You made a phone call in the midst of your struggle during Hope's life, where you called David on the cell phone one day.

Nancy: I did. David was great about – well, his company was great to let him stay home a lot with Hope since we knew her life would be short. And he stayed home every Wednesday so I could go to Bible study, and I came out one Wednesday after class and picked up my mobile to call him and check on him, and he didn't answer at home, and I thought that was strange.

And so I called his mobile, and he answered, and I said, "Well, where are you?" And he said, "We're all fine," and he said, "We're at the doctor's office but not for Hope." He said, "Matt fell in PE this morning and broke off his front tooth." And when he said that, I couldn't say anything for a moment, I think, because it hit me in the area of my greatest fear, and that was that losing Hope would not be our only loss.

Dennis: You wrote in your book – "That night, as David and I talked about the day, we realized that we both had an unspoken agreement with God that when something like this, fine, we will all accept losing Hope and all that that brings, but we don't lose Matt, we don't lose each other. No car accidents, no cancer, no financial collapse, that's it.

But as we voiced our deepest feelings and fears out loud, we realized that we have to let go of those things, too. We have to truth God with everything we have."

Nancy: You know, what that comes down to is what we know and believe about God, and when we believe that God loves us, when we believe His plans for us are for good and not for evil, even though they may include some very difficult things, then we can entrust everything to His care.

Bob: I've had friends who have gone through circumstances similar to what you went through; a couple we knew once who had a baby who was anacephalic who died shortly after birth. Help those of us who don't walk the same road you walk but try to be friends to those who do – we are often very clumsy at knowing what to say, knowing how to respond, what's helpful? It's awkward, it's hard for us. What did people do that you look back on and go, "That was a gift from God to us," and what were some things that you can coach us to stay away from?

Nancy: Well, I think you said a key word there where you said, "It's awkward." And so I think if we ever think that we can come up with the right words or attitude to thing to do to take away the awkwardness in a hurtful situation like this, then that's a pretty unrealistic expectation. So we just have to get out on the table that it's awkward.

But what I would just say to people is overcome the awkwardness even though it's awkward. You don't even have to have the right, perfect thing to say because the truth is, nothing you can say can fix it or even necessarily make it feel any better, and you probably can't give them some wisdom that they haven't thought of.

But the truth is, when people cared enough to overcome the awkwardness, even if all they could say was "I really don't know what to say."

David: Or, "I'm sorry."

Nancy: I'm sorry, yeah. You know, that was enough. What was the hardest was when someone couldn't overcome the awkwardness and so they just said nothing, and that was probably the most hurtful thing.

Dennis: And the interesting thing is that the tendency is to recoil ...

Nancy: ... definitely ...

Dennis: ... from someone's valley.

Nancy: Well, and what we found was some people assumed we'd want them to. Some people assumed we'd want to be alone; that we wouldn't want to talk to people about it.

Bob: What you need is not privacy but community, right?

Nancy: Oh, definitely, and, you know, I figured out early on that since Hope's life was going to be short, I didn't want David and I to be the only ones who knew her and who loved her. I knew the day would come that she would be gone, and I didn't want to be the only one grieving her loss. And so people would call us. They'd say what can you do for us? Can we bring you a mean? And I would say, "Bring us a meal, but bring us enough for your family, too, and just come and have that meal with us."

And so over those months of Hope's life, we had more people in our home than we've ever had, and it was such a rich time of meaningful relationship with people. And they were blessed, too – they were blessed by being with us and talking to us during that time, and just by knowing Hope, and then, when she was gone, they missed her, too.

Bob: David, did Hope's condition physically – did it deteriorate obviously? Were you watching her get worse?

David: It did progress through several stages that were observable, and it was scary, I will tell you that – not knowing exactly how it would play out. This syndrome is so rare, the doctors couldn't even tell us exactly what to expect. But it wasn't terrible. Most of what we observed was she would move less and less and less throughout the months. The big line came a couple of months into her life where she began having seizures. That's very common in this syndrome, and that is part of our story, our unique path, that we were taken through by having to deal with this.

Although we were walking through this valley of the shadow of death, at the same time, this was our daughter's life. We couldn't wait until it got better to enjoy her. At the same time that we were beginning to grieve her loss, we were enjoying her as the unique gift that she was, and I will tell you, she was a gift.

Nancy describes sharing her with people, and we don't believe she was a magical child, she was just a little baby, but she had a disarming effect on people. She broke down barriers. We established relationships with our neighbors right in our cul-de-sac that we had never had before, and I don't know that we could have developed. All the pretenses were stripped away.

We had very few meaningless conversations with people when Hope was right there in our presence. We got pretty quickly to important matters of life and death, believe it or not, because of this quiet little baby.

Bob: Did you find yourself in April and May of 1999, Nancy, going "We're losing her? She's slipped away?"

Nancy: Yeah. It's kind of hard for me to talk about because, yeah, you know, and I was fearful about what it would be like for her to die and to find her dead, and we did see her slipping away.

Dennis: I think we ought to mention here that this syndrome literally took your daughter's life because her cells weren't able to remove the toxins from her system. So, one-by-one, her system slowly began to shut down.

When the end came, could you look back and see later that your daughter really was close to death? Or was that morning when you came in a shock?

Nancy: During Hope's life, one thing I decided, even while I was in the hospital, was that since her life would not be market by years, that we would mark each month. And so every month we had a birthday party, and we did all different things all different months. One month it was a mother-daughter tea, you know, that kind of thing. But the big party was six months, because since he had told us most children with this syndrome live less than six months, we had a huge party at the park and had Backyard Burgers come and played softball, and I remember driving home from that party, David and I and Hope, and I remember saying to David, "I don't think we'll have a seven-month party."

Bob: You know, just hearing you talk about a picnic at the park with a little girl who is – you don't think she's going to be around another couple of weeks – hearing that, it's kind of like how do you picnic in the midst of suffering? How do you go there? It sounds absurd to be out having fun playing softball with your friends a few weeks before you feel like your daughter is about to die.

Nancy: I didn't want to miss celebrating the fact that she was here.

David: You know, I think we need to throw this in because it's critical to trying to understand how we responded to all of this, and that is our firm belief that this life is not all there is. If this life is all there is, then that is an absurd exercise to go through, I'll grant you that, but our firm belief is that the length of our life on this earth, you know, it's relative to an eternity, and we held on from the very first day we got the news, to our strong belief and confidence that Hope, in the context of eternity, was not going to live one day less than any of the rest of us.

And that is critical, you know, to our ability to celebrate because, along the way, those were 199 very intense, amazing days for the Guthrie family.

Dennis: And that her life held dignity.

David: Oh, dignity and meaning and significance.

Dennis: And the image of God. You know, we've lost that in our culture today around children. I have to ask you this question, because I'm reflecting back on my children and now my grandchildren. There is something magical occurs around the sixth month. It's the grins, it's the giggles, it's the gleam in the eye. Did Hope share any of that with you?

Nancy: Those were gifts we weren't given.

Dennis: So she was listless?

Nancy: Well, the truth was, her best day was the day she was born, and even though she grew physically from the day she was born, she was deteriorating.

Bob: There came a morning when you went in to check on Hope, and she was gone.

David: We had Hope in a crib just a few feet from our bed the whole time that she was with us, and typically I would get up during the night and, at that point, we had worked into a routine where she was feeding at night through a pump and a continuous tube so that she wouldn't get hungry during the night, she'd just continuously get fed. But I walked over and just touched her leg, and felt that it was too cool, and so I knew at that point she was gone. And I just walked back over to the bed, and Nancy actually had kind of raised her head up already and looked over in my direction, and I just told her, "She's gone."

Nancy: I guess we always wonder what we'll do in a moment like that, don't we? I think, in some ways, I kind of clicked into some automatic pilot, you know, in terms of what needs to be done here? And we woke up our son, Matt, and told him that she had died, and called a friend to come over and stay with Matt, and we had worked out a plan with our doctor to take her to the emergency room where she would be declared dead in the hospital rather than in our home, and I changed her diaper and then felt the quandary of whether I should put another one on, and we got into the car, and we drove to the hospital, and our pediatrician was waiting outside for us on the curb, and we took her in, and then we had that hard – probably the hardest moment was to hand over her body to the man from the mortuary company and to know that we'd never, in this life, get to see her again.

Dennis: The funeral had to be a profound time of ministry in your lives, as family and friends, your church body, which had been so comforting in the process over those 199 days. What do you remember from the funeral?

Nancy: I remember that it was excellent and beautiful. The music was beautiful, and we picked it carefully, and people we loved got up and shared how this little child who could not see or hear or speak, who was so limited, how she had made an enormous difference in their lives and how much meaning her life had had.

And then Anne Graham Lotts, whom I work with, came and gave a message, asking the question, "Is Your Hope in Heaven?"

And it was a beautiful day. It was a hard, bitter day, and the next day was harder to wake up without her and begin life without her, but it was a beautiful day.

Dennis: One of the things that you write about in your book, "Holding On to Hope" is the real tragedy of life is not to go through an experience of losing a daughter or a son, but the greatest tragedy of life is to miss the God of life and the God of all hope.

And there are so many trappings, so many distractions, so many things luring us away. Bob, I really believe a program like this, where we've stepped into people's lives, and we've allowed them to peer, as we've had the chance to peer, into Nancy and David's life, has a profound impact of reminding us of what's important.

It's about people and God and eternity and have you trusted Jesus Christ for your eternal destination? Because if you haven't, the real tragedy is if you miss Him, you've missed life. And He offers, to anyone who hears Him knocking at the door, He said, "Behold, I will come in."

I would just encourage anyone right now who has, by virtue of visiting this family today, who has been reminded of eternity, to simply right now say Lord Jesus be my Savior, be my Lord, be the Maker of my life. Build my marriage, my home, my family. I want You to be the center of my life, and He will answer that prayer.

Bob: You know, I think about people, Dennis, who have heard about David and Nancy's response to these difficult circumstances, and as we have said throughout this week, their response comes from a life of getting to know God, and none of us knows what is ahead for us, but we would be foolish to build our house on the sand, on things that are trivial, things that may seem important for a moment but are ultimately trivia.

Instead, we need to be pursuing that which is eternally important. You know, we undoubtedly have some listeners who, as they look at their lives, would say I have been more engaged in the pursuit of trivial matters than I have been in eternal things, and I've been more caught up in the things of this life and this world than I have in thoughts of eternity.

I want to encourage those listeners to begin today with a conscious decision to make a new start, to have a new focus, a new priority. We have a book here at FamilyLife that we make routinely available to folks. It's called "Pursuing God," and it's a book that talks about how a man can be in a right relationship with God. The eternal stuff we're talking about. And if your life has been invested in stuff that you look at now and say it's empty, it's meaningless, then you need to make a decision today to reinvest, to sell your holdings in trivia and reinvest your life in eternal things.

Call us and get a copy of this book, "Pursuing God." We will send it to you at no charge. It explains to you how a person can be rightly related to the God of the Universe; how you can be reconciled in your relationship with Him. Again, the title of the book is "Pursuing God." You can request a copy either by go online at FamilyLife.com or by calling us at 1-800-FLTODAY. Again, it's for anyone who wants to understand what it means to have a personal relationship with God through Jesus Christ.

Again, our website is FamilyLife.com, our toll-free number is 1-800-FLTODAY, and ask about the book, "Pursuing God." And we also encourage you to ask about the book that Nancy has written called "Holding On to Hope," which tells the story we've been looking at this week.

And there is also a new book that you've come out with, Nancy, that is called "The One Year Book of Hope," that is a year-long daily devotional for someone to work his way through or her way through if they have been in a process of grieving or mourning. This helps you re-orient your thinking about what the Bible has to say about life and death and hope and God and suffering and how all of that comes together.

We have these resources in our FamilyLife Resource Center, and you can go to our website, FamilyLife.com for more information about Nancy's books. Click the red button that says "Go," in the middle of the screen, and that will take you right to the page where you'll find the information you need, or call us at 1-800-358-6329. That's 1-800-F-as-in-family, L-as-in-life, and then the word TODAY. Someone on our team will make sure you get these resources sent out to you.

Well, with Christmas coming up Monday, there are probably a lot of our listeners who are in the same situation we are in, Dennis, with a lot still to do, a lot on the list that needs to be accomplished before we can actually sit down and celebrate Christmas.

I'm hoping one of the things folks will consider adding to their list of things to do at Christmastime would be to contact us at FamilyLife either by go online at FamilyLife.com or calling 1-800-FLTODAY and making a donation to our ministry. One of the reasons we're hoping for that is because this month we have had some friends who have made a matching gift available. We've been talking about it this month.

Every donation we receive during the month of December is being matched on a dollar-for-dollar basis up to a total of $500,000, and many of our listeners have been calling us or going online to make a donation. We're thankful to those of you who have already done that.

If we are on your to-do list, and you've not contacted us yet at FamilyLife, we hope you will do that soon, and if you haven't added FamilyLife to that to-do list yet, I hope you will consider making a year-end contribution to our ministry. We certainly hope you'll pray that we're able to take full advantage of this matching gift that's been made available to us during the month of December.

If you'd like to make a donation, you can do that online at FamilyLife.com, or you can call 1-800-FLTODAY and someone on our team can take the information, and we do appreciate hearing from you, thanks for your support of this ministry, particularly here as 2006 draws to a close.

Well, tomorrow we are going to hear about a second opportunity that David and Nancy Guthrie had to deal with this issue of Zellweger syndrome. We'll hear how that opportunity came about, what you guys decided about God's care in the midst of that situation as well. I hope our listeners can be here with us tomorrow.

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 tomorrow for another edition of FamilyLife Today.

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