Hope in Grief: David & Nancy Guthrie – PART 1

Often, our idealized expectations are not realized because God’s plan is so much different from—and greater than—our own. The Guthrie family’s discovery of their newborn’s rare metabolic disorder is a prime example. Join Michael Easley in studio with David and Nancy Guthrie.

Part 2 with the Guthries.

Part 3 with the Guthries.

About David & Nancy Guthrie

David & Nancy Guthrie have a twenty-something son, Matt, and have had two children, a daughter, Hope, and a son, Gabriel, who were born with a rare genetic disorder called Zellweger Syndrome and each lived six months.

They host weekend “Respite Retreats” for married couples to spend unhurried time with other couples who understand the devastation of losing a child, to learn from each other, encourage each other, and experience together renewed hope for the future.

Nancy has written a number of books, including Holding On to Hope: A Pathway of Suffering to the Heart of God in 2002, where she offered many of the lessons she learned from this sorrowful experience. Since then, she has continued to write books that reflect her compassion for hurting people and her passion for applying God’s Word to real life.

After more than 20 years with Word Music, David Guthrie launched the very first “church musical publisher just for kids,” Little Big Stuff Music. He works alongside Rob Howard in writing and recording kids’ musical projects that serve the church and proclaim the gospel.

Click to read Transcript

EASLEY: Welcome to the broadcast. It’s a privilege to have David and Nancy Guthrie in studio. David and Nancy’s story is one that is going to be challenging and encouraging, hard at times, but it is going to end with great hope. This is such a wonderful interview that we’re going to bring it to you in three installments. The apostle Paul writes in his second letter to the Corinthians but we have this treasure in earthen vessels so that the surpassing greatness of power will be of God and not from ourselves. We are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed, always carrying about in the body the dying of Jesus so that the life of Jesus also may be manifested in our bodies. Paul talks about persecution and being struck down, unlike any of our other New Testament writers and it shows a bit of his life, of the trials that he faced, of the problems, of the beatings he endured. We are in studio today with David and Nancy Guthrie. They have quite the story to tell. Why don’t we start talking about when you guys met, where you guys met, how you got married, the fun parts.

DAVID GUTHRIE: Sure, we’re happy to talk about that and great to be with you, Michael. Nancy was working at Word Publishing in Waco, Texas many years ago, right out of college. I got a job with the music part of that company, Word Music, and moved from Portland, Oregon to Waco, Texas. That was a big culture shock as you can imagine. Everything was different, but one of the best parts of that move was that soon as I got to work two doors down the hall was this cute little publicist, in the book publishing company called Nancy Jinks at that time. So we had a bit of an office romance. We also went to church together.

E: What year was that?

NANCY GUTHRIE: 1985. We got married a year from the day we met. October 18,1986.

E: You are young pups.

DAVID: She’s younger than I am.

E: ‘86 you get married; you’re still working in Waco and that lasts how long before you moved?

NANCY: Two to three years and then the company moved us to Dallas where we were for five years and then we’ve been here in Nashville for twenty years and we love it. Please don’t ever make us move.

E: Yes, this is our sixth or seventh move and we feel the same way. So you’re happily married, have a good job, a good relocation to Dallas, you start having children and then?

NANCY: Our son Matt is now twenty-four so he was born in those Dallas years before we moved here to Nashville.

E: So take up the story from there.

DAVID: When Matt our son was born, Nancy left her work at the company and started working from home so that she could be with Matt. I’ll say this but it’s only because I hear her say it. She felt like, “Wow, how do people have more than one child, because one seems like such a challenge to parent?” But I am a little bit older; I was thirty when we got married so after several years when we were here in Nashville, we began to say, “Well if we’re going to have a larger family, this would be the time.”

E: Yeah, start working on that.

DAVID: When Matt was eight years old, Nancy went to the hospital and gave birth to a daughter who we named Hope, not necessarily thinking that name would have any particular significance, other than we liked the name and always had. We certainly were interested in the idea of Biblical hope and what that means.

NANCY: We discovered right away that that name would have great significance. When Hope was born, it was a immediately obvious that everything wasn’t quite right. She had club feet; she was very lethargic; she wasn’t moving much; she wasn’t holding her temperature; what our pediatrician called a number of little things that quite often add up to something bigger.  He wanted to have a geneticists from Vanderbilt Medical Center come and examine her the second day, which he did. He came to our hospital room that second day of Hope’s life and told us that Hope had a rare metabolic disorder called Zellweger Syndrome. We’d never heard of that and you probably haven’t either. Most of your listeners probably haven’t.

E: You know it’s interesting, when you encounter something and I’ve had my issues and we all have them, and you know nothing about them and within a very short time you become somewhat of an expert of this new word, this new language.

NANCY: Well what it meant for someone who’s not an expert is basically Hope was missing a little subcellular particle called peroxisomes and our peroxisomes which you and I have in every cell, are kind of like the cells trashman. One kind of trash that are responsible for taking out.

DAVID: That’s not the actual medical explanation. (Laughter), but it helps.

E: Mumbo jumbo.

NANCY: So what that meant for Hopes cells was there’s nobody to take out the trash, so these long chain fatty acids would build up in her cells and therefore in her systems and therefore become toxic. On that second day, the geneticist told us that in fact a lot of damage had already been done to all of Hope’s major organs, especially her liver, and her kidneys, and her brain. He told us there was no treatment and that most children with the syndrome live less than six months. He handed us two zerox sheets of paper out of a medical textbook that described everything that was likely wrong in Hopes body, and everything that would go wrong leading to her death, and a number of postmortem photographs of babies with this syndrome.

E: Oh my word!

NANCY: And he left the room and David crawled up into the bed with me and we cried, and we cried out to God, probably one of the most unceremonious prayer we’ve ever prayed, which was just, “God help us.” I remember that we expressed to God that we wanted to trust Him with it, but of course so early on that journey, we hardly even had a sense of what that would mean for us.

E: What year was this? She was born, when?

NANCY: She was born in 1998. David you’re hearing this information. You are the husband, the doting husband, encouraging husband, what goes through your head and heart when you hear these new words?

DAVID: Well the first two days in the hospital were surreal. You know most people say, “We went to the hospital expecting to have a perfectly healthy baby.” We were shocked and that’s true in one way, but I’m a bit of a pessimist by nature, a glass half empty type guy, so the idea of something going wrong is never real far from my mind through an experience like that, but still, that first day I remember just a growing sinking feeling developing because from the time that the baby was delivered, I felt like I saw a little look in the eyes of the obstetrician and the nurse going back and forth soon as Hope came out, like somethings not right. They said, “Well she’s going to be ok; she does have club feet but we can fix that. Don’t worry about that.” So Hope went to the nursery and it seemed like many, many babies were being born that day at Baptist Hospital in Nashville. You stand by the glass windows there looking in at the newborns and they bring them through and do their testing, and cleaning, and prepping, and wrapping them up and putting them in the little beds, but Hope stayed on that little warming area for much of the day. Friends were coming to the hospital, and family, and celebrating with us and I couldn’t quite cut loose and enjoy the whole thing because I sensed somethings not right here. We just don’t know yet what it is.

E: Nancy, did you have anything in your pregnancy, anything in your head, that might have made you feel something was wrong?

NANCY: You know, I didn’t. I look back and I realize I probably should have when I compare that pregnancy particularly in terms of movement to my previous pregnancy with our healthy son, Matt. I just remember that weird feeling; you may remember this with your wife when you see them kicking out of your stomach and you’re feeling all this stuff and while I felt a little bit, I never had that level. It just never crossed my mind that something might be wrong and of course then afterward I realized, “Wow, that was different.”

E: So this is the second day in the hospital, so take us forward.

DAVID: Well, as Nancy described when the geneticist and a few other doctors came in to our room with long faces, we thought, “Ok, this is it. So we’re going to find out something.” At that point you realize how fraught the whole experience is. When we welcome a new child into our family we’re not thinking only of that little baby, but we’re looking ahead as much as we can to this lifetime together of a child who will grow. We all have somewhat of an idealized image in our minds of what that is, but I think Nancy and I immediately were having to grapple with “Hopes life is probably going to be different,” but not like what we intended or expected, yet we don’t know what it is. Outside the room were lots of our family because they had to go outside of the room while these doctors came. When the doctors delivered the news that Nancy described earlier, they also said, “Now we’ll be confirming this with some tests and we’ll send them off to John Hopkins and it will take a week or two, maybe.” It was right during the Thanksgiving Holidays. So the door closed and as Nancy said I got in bed with her and we cried, we prayed and then we had to quickly decide what will we tell people. What will we tell our family? They’re gathered outside, but we don’t have confirmation yet from these tests. Perhaps we shouldn’t unload what’s been told to us yet. The next few days were, in addition to the shock, and having to stay in the hospital and learn how to care for our baby now with this condition, we were also experiencing a lot of loneliness, because we had this devastating news that ultimately we needed to share with others to help us bear that burden to some degree. We couldn’t tell them yet. We decided not to. The door swung open and we brought the family back in; we smiled and they looked to us to see, “Ok, what did the doctors say?” The extent of what we told them at that time was just, “Well, there are some problems and they don’t really know for sure yet and so there is going to be more testing.” That was one of the many little challenges added on top of other challenges. You get this devastating news that so many people have and even people listening to us today, probably have just gotten the most devastating news they could imagine.

E: Now, I often say the only time we have faith is in between. When things are going well; I have a good job; I’ve got money in the bank; my health is okay and my my kids are okay; life is good, I really don’t have “ faith.” The only time is when the props are knocked out from under us and where you guys are sitting in 1998 in a hospital room and going, “What in the world is going to happen?”

NANCY: Well that next morning our pastor came to see us and I expressed to him that very idea. I remember saying to him, “You know what Charles? I think here is where the rubber is going to meet the road in my life. I’m going to find out if I really believe all I’ve said I believe, all my whole life.” And that was really the case, not that we questioned God, but there was a sense that everything was questioned if that makes sense. All of our assumptions about how this life with God works, and you know if I’ve been good, if He’s a good God, and surely He’s going to give me a good life. And is this the good life? So what defines a good life?  So all of those things began to be examined. That first week was a week of disappointment. It was going to take a while to do the testing, but they were doing individual tests to see if she was experiencing the impact of this, so I remember one of the lowest moments for me being; I was holding her in the ICU and the nurse told me the results of the hearing tests and that she couldn’t hear. I just remember saying to her, “You mean she is never going to hear me?” That seemed like an incredible loss to me. I remember wanting to talk to someone who had lost a child so I could ask them, “What do you say when someone asks you, “How many children do you have?” I was immediately thinking towards what’s it going to be like to have my child die, likely in our home? We talked to someone about that, but the other thing I figured out during that week, Michael, was that Hopes life isn’t going to be measured in years. It’s going to likely be measured in weeks and months and I don’t want to spend her life mourning her coming death and thereby miss her life. So since she’s not going to have a first birthday, we’re going to celebrate every month. We’re going to have a birthday party every month and we’re going to do the best we can to enjoy her life the number of days that God gives us not knowing the number of days that would be.

E: Sixteen years now and you still talk about this, both of you fighting back tears. So the parents out there and you had them I bet, who came and told you, “If only you believed; if you’d have done this; if you’d have done that, well intentioned, obdurate believers who say stupid things. A loss is a loss. It never goes away, but it changes. How?

DAVID: Yes, by the mercy of God, I think it does change its weight and its devastating moment by moment impact lessons over time as we allow healing in our life for that loss. But it now is a part of who we are, not only all the memories but all that has come about on the heels of this and as a result of that experience. Much of what we do now has some relationship to dealing with people who have lost loved ones and we couldn’t have imagined being in that place, being equipped, or feeling called to that kind of a role in the lives of others, but it’s just natural now because we’ve experienced that others find a connection with us and therefore want to hear how we did this.

E: We’ll tell you more about this later in the broadcast, but you guys have a ministry called Respite Retreats for couples who’ve lost children and as you work your way to NancyGuthrie.com you’ll find the twelve books she has authored. Three in particular we’re talking about in these two broadcasts, 2002 Holding onto Hope, A Pathway of Suffering to the Heart of God, and 2005, she produced the One Year Book of Hope also by Tyndell, and later in 2007, Hoping for Something Better, Refusing to Settle for LIfe as Usual.

So you were holding hope for days, and weeks, and maybe month celebrations?

NANCY: One day I remember in particular during that journey; I was up in Hopes nursery. She never really spent the night in her nursery because she was in a bassinette by our bed. I was there in the rocking chair and I remember thinking to myself, “Ok, God we’ve been willing to accept that Hopes life is going to be short, but how about I’m going to pray that you will extend her life as long as possible?” The thoughts about how to pray this way began to take shape in my mind and I thought to myself, “Wait a minute, why do I want to ask God to extend her life as long as possible? Why do I think I know that a longer life would be better for her or for me?” So I guess this is one of the places where faith became real to us. Do I trust God that He will give her the length of life that He intends for her and that it will be good and right for her and good and right for me? It won’t necessarily feel like enough for me. Hope was with us for one hundred and ninety-nine days and I have to tell you, it’s not enough in my accounting. So many times, I have longed for more, but faith for me has not been defined by trying to manipulate God to get what I want, the length of life, the quality of life, the makeup of our family, what I think would be good and best, but by simply trusting. He’s not out to hurt me; He’s bending all things toward my good and His glory and that might not always look like what I think it ought to look.

E: Did you ask God why?

NANCY: I think everybody who goes through any kind of loss or struggle asks the question, “Why?” David read one of Philip Yancey’s books and it really helped us during this time. In his book, he changed the question “why” in terms of what caused this, “To what end,” or we would say, “For what purpose?” So I think we went through this experience and came out of it with a desire to find God’s purpose in it. What is it you want to do in us and through us that would require this kind of loss? How can we be a part of what you want to do, that we do believe is good rather than feel like we’re victims, or rather than simmer in a sense of tragedy? But I would also say that, that question “Why?” was very significant in our lives because it did drive us to the Bible to get an answer. I think that so many people run to all different sources to try and get an answer to “Why?.” They look in; they look out, and that search has sent us to the Bible and it did something in me that has been very significant for all the years since then, which is to come to a deeper understanding of Genesis 3. We look for all of these very personal, individual, listic answers to the question “Why?” and here’s the reason why. That the curse has so infiltrated this world, that it has impacted all of creation; it has infiltrated even our genetic code so that our genes don’t work right. That’s why we sing with such great joy, “He comes to make His blessings flow as far as the curse is found.” That’s what real hope is. Hope isn’t what I’m going to get in this present life; everything I want my life to be, instead hope is that Christ is coming again and when He comes He will make His blessings flow far as the curse is found. There will be no more death; there will be no more curse. So that’s how going to the Bible has helped with that question of “Why?” and then to come to Genesis 3, and to grow in a sense of our understanding of God’s purposes that He is working out in the world, and that we get ushered into instead of trying to bend it to be all about me in the here and now. Instead, it’s “Help me to see how we’re to be a part of what God is doing in the world and that the day is coming when the curse will be gone for good.”

E: We are fallen creatures and we live in a fallen context and that’s what you’ve articulated beautifully in Genesis 3. But, boy do we try to make earth, heaven; if we live right, do right, act right, read the Bible, go to church, fellowship with Christians. We have this expectation God should bless us. We don’t talk about it that way, right?

NANCY: Well here’s the thing. We feel incredibly blessed. Another thing this experience did is to help us to redefine, “What is God’s blessing?” It seems to be in the Scripture: What His  blessing is, is always getting more of God and His goodness.

DAVID: We have had unexpected blessings through this experience. I think I always believed and my own experience kind of taught me that if I was joyful it was because great things were happening and If I was happy and I was experiencing God’s joy; if sorrow came that would take me out of joy. I never realized that joy and sorrow could coexist in that way because every moment we were awake during Hopes life, we were aware that this could be her last day; these could be her last moments, in fact. That is sorrowful and even when she was alive, we were beginning to mourn her death. However at the same time, we were determined to soak up every moment of joy and believe it or not, she brought us a ton of joy. I don’t know how we could have been happier to be her parents. We loved her; other people loved her; our joy was full and we tried to grab as much of it as we could and taste as much as we could.

E: There are going to be a lot of “Why” questions in life that we are never going to have the answer to. Part of the faith journey is trusting Christ, in Christ alone. It’s trusting Him when we cannot see the future; it’s trusting in the uncertain outcomes. Whenever I quote the Hebrew great faith passage, I will physically take my hand and I read it. Faith is confident assurance of things hoped for and then I put my hand over my eyes and finish. And the conviction of things not yet seen.  Faith is not just a point and time where we trust Christ, in Christ alone. It’s being faithful; it’s trusting Christ at His Word; it’s trusting Christ when our circumstances tell us otherwise; it’s trusting Christ when the world doesn’t make sense. Well we want you to join us next time for the second part of our broadcast with David and Nancy Guthrie. Until then this is Michael Easley inContext.

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