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.
PEEK: You asked earlier if grief had become our identity, and I think what we have chosen instead, is that we see ourselves as stewards. As believers we get handed many different things that God entrusts us with and when we read in the Scriptures, the parable of The Talents and what we see is they’re entrusted to us for one purpose and that’s for our return for His Kingdom. So I think what has helped us maybe from taking on that identity, and what helped us pretty immediately during Gabe’s life, and in the years since his death is to see that this is what God entrusted to us; it’s not what we would have asked for and even being here with you around the microphone, I mean David and I are comfortable in front of the microphones so we further see that this is what God has entrusted to us. We are seeking to be good stewards with it.
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, grieving through the loss of a child, no the loss of two children, and how we press on by faith in Christ. Thanks for joining us again today for the last part of our interview with David and Nancy Guthrie.
You are working through grief, you’re working through loss, family dynamics, all these things. It doesn’t stop and somewhere in there you decide okay are we going to have any more children?
NANCY: Once we had Hope and she had Zellweger’s Syndrome which she had that because evidently David and I are carriers of the recessive gene trait for that syndrome and that means whenever we have a child, that child would have a twenty-five percent chance of having the fatal syndrome. So we had our healthy son, Matt, and we had Hope, who had hit these twenty-five percent odds of having the fatal syndrome so we had a difficult decision to make about whether or not we would have more children. Honestly, Michael, it wasn’t a simple decision. Some people would immediately say, “Oh gosh, I would never want to take that chance,” but I realize that when they hear our story they perhaps imagine the pain of it, but it’s harder to imagine the joy of it. Her life did bring us a lot of joy, so we didn’t immediately say, “No, it would be the worst thing in the world to have another child who lived with us a short time like Hope did.” Also our lives aren’t just us and there was our son, Matt, who lived in a house for six months waiting for a sibling to die, and then a lot longer in a house with a really sad mom, which I promise it would not have been fun,and then there was our parents. As hard as it is to lose a child, I think perhaps it’s doubly difficult to watch your child lose a child. You have nothing in your bag to pull out to fix it and so we decided to take surgical steps to prevent another pregnancy. So you can imagine our surprise to put it mildly to learn a year and a half after Hope died that I was pregnant, but we weren’t just surprised we were afraid.
EASLEY: Of course.
N: When I first discovered it there was a cautious sense of joy, like here’s this thing we have ruled out and God has clearly overruled it. Perhaps He’s done this because He’s going to give us another healthy child to raise and enjoy which we didn’t expect, which honestly at that point our family didn’t feel complete and so that possibility was a joyous possibility but significant. But then there’s also this hit in the gut like, “Wow, you mean He might be asking us to love and lose another child? To go through this again?” And that seemed overwhelming. So we went through prenatal testing because we felt like it’s going to be helpful to know which way we’re going. We discovered the child I was carrying was a boy who would also have the fatal syndrome.
EASLEY: Twenty five percent chance? So lightning strikes twice. How far along in your pregnancy were you when you had the testing done?
N: We had the testing done at about eight weeks and we got the news at about fifteen weeks.
E: So very early.
DAVID: We had arranged with the geneticist when he had the results of the tests, that he would call us. I was working at the office, Nancy was at home so we just decided I’d drive home and we’ll talk to him on the phone and we’d get that news together. Actually, this was a really cool thing for me; my drive home was so intense as you can imagine. I was thinking, “Wow, what if? Can we do this again?” On the drive home for some reason I had this thought, “What if this phone call were a different kind of call? What if it were our pastor for example calling and saying, “There’s a young mother giving birth, a single mother giving birth to a child. They’ve just discovered that the child will have Zellweger’s Syndrome and she can’t possibly care for the child. Could there possibly be parents who would adopt such a child?”
D: I thought in that moment we would do it. Yes! I thought we had been down that road before; we know both the joys and the challenges, the devastating sorrow of it. What a calling! Would we do it? Yes, we’d do it. By the time I got home, I really felt like my heart was prepared for that message if that was the news we were going to get. Indeed, the doctor got us on the phone and said, “Well the tests are in and they’re positive.”
E: Are there degrees of the disease? The recessive traits and in other words, the child is not going to live; they’re not going to thrive, quality of life discussions?
D: Yes, this disorder is part of a spectrum that are similar but one doesn’t lead to the other and honestly, it’s not easy to talk about. It’s a medical (unfinished thought).
E: A lot of parents who have Trisomy 18 children, these type of diagnosis, you don’t hear of those things until you face them, or you don’t read them as common things and then of course you read the statistics on how long these children live and whether they will develop or not. So take us through the pregnancy.
N: It was very different this time going through nine months of pregnancy knowing we were going to have a child that was going to die. In some ways it made it more precious. It was part of his life that we wanted to cherish. It was awkward at times, you know we would see people who knew we had had a child who died, and they’d see I was pregnant and they’d say, “Oh.” But to over and over again say, “Yes, but this child’s going to die too.” Talk about a conversation stopper, you know that was awkward.
E: Did you want to hide? Did you want to stay home?
N: No, we had already begun during Hopes life, after her death to sense that God wanted to use us in the lives of other people. Somewhere along the way, early on in Hopes life and shortly after her death, I became very caught up in resentment toward people in the way they responded or didn’t respond to me to somehow God doing a work of grace in my life so I could see what a privilege it was that this experience opened up a door for us to minister to and bless other people.
E: I’m going to stop you there, Nancy, because I would say nine out of ten women, nine out of ten couples would not be able to do that because they are so focused on their own hurt, their own wound, it’s hard for them to get out of that.
N: It is hard.
E: So remarkably, where did that come from in you? It’d be one thing if this was the first time. The second is like double duty. You’re saying, “Okay, Lord.”
D: I would say there are several things at work. For me I would say this idea that we discussed before,that God can and does have good purpose even in suffering, helped me face this with a sense of, “I want this to be purposeful in my life.” We had the benefit, the blessing of looking back, just a year and a half, two years before and we could prove that.
E: But you had to make choices. You had to make choices not to go dark. You had to make choices to say, “I choose to see God’s hand in this. I choose to look for some good in this,” because it would be much easier to choose the other and say, “God you’re not fair; you’re not sovereign; you do what you want; The Lord is in His heavens; He does what He pleases, but I don’t have to like what pleases Him.
D: Sure. Sure.
N: I went away for a few days after we got that diagnosis from the doctor. I had to go on a business trip. I said, “I’ll go if you buy me a couple of extra nights in a nice hotel because,” I thought, “I need sometime to think, and pray, and cry,” and I can remember that time doing that. I can just picture myself down in the hotel room, down in San Antonio as I got ready to go the airport to come back home after those days. I just remember looking out the window just saying to God, “Okay, if you’re going to ask me to do this again, then you must have something really good that you want to do with it that outways, out glorifies, the suffering aspect of it. If that’s so, I want you to do it!” To me at that point, the greatest tragedy would be, if we walk through it again and if somehow we were so resentful, resistant to God, that in a sense it was just wasted pain. I just said, “Okay God, if you’re going to do something, then do it and keep me from being resistant to whatever it is you want to do through it, even if the work you want to do is only in me. Just don’t let this pain be wasted pain. Let it not be for nothing.” So when you ask how do we get to that place? I think that’s it; you know that sense in which we didn’t want it to be for nothing.
E: How do you both keep from looking at your life, as this is your identity? Don’t you get tired of being identified as the couple that lost two children to a rare genetic disorder?
N: I suppose to some people, the bigger thing is that there have been times on this journey I have felt like maybe it is my identity, and even greater than that, that certain people that are around me see that as, it’s who’ve I’ve become and that being embarrassing to me. But here’s the thing, Michael, we only want to be identified by one thing: and that’s our connectedness to Jesus Christ. I think over the years now we have interacted with enough grieving people that especially for those for whom it has become their identity, we’ve gotten a close view of that and it’s not pretty.
E: It’s not and it’s my experience too, even as a pastor is that people are identified by divorce, by a loss, by a death, by a disease, by whatever, and it’s so hard to say, “Look, as we began, we’re fallen creatures in a fallen context; we’re all going to die; we can’t anticipate what that’s going to be like; we’ll all react differently; there’s not any right or wrong way to embrace these things; you walk through them blindly by faith and begging for mercy.” But you guys obviously through Christ’s mercy, and Christ’s strength and faith, I hope a community, at some point came around at least and that there were a handful that said, “Hey, we’re with you in this.”
N: Oh, very much.
D: Yes, we had a ton of support and we’re so grateful for that. It’s interesting that you’re talking about identity. A few years after we lost our second child, I lost my job. I was let go from the company I had worked for, for twenty one years. Talk about your identity!
E: For a man especially.
D: Everyone has those things that come along and it redefines us or we’re forced to look again at who we are and how we identify, and define ourselves, and what makes our life worthwhile, and I would say that’s not a bad thing. It’s a hard thing and it really hurts. I’ll just mention these retreats that Nancy and I do, these Respite Retreats; retreats for eleven couples that get with us; eleven other couples who have lost a child. We find people at all points on that journey and some are entrenched, quite honestly in that identity and are finding it difficult to move on or move forward, or move at all and that’s one of the challenges that grief presents, but honestly it’s a beautiful thing to see God be faithful when we throw our confidence and our trust in Him so that we won’t be sunk by this heavy grief. But we go to Him; He invites us to throw our cares on Him; He cares for us and He walks with us through the valley of the shadow of death and it’s a beautiful thing to see people making these halting steps forward.
E: One sentence answer: How did God care for you?
N: He promised me that He would do a work of healing and He has done a work of healing and He is doing a work of healing.
D: I would say that the sense of hopefulness that my life is not finished. Honestly, there’s something strangely encouraging about walking through the most difficult thing you can imagine and find that you’re still standing. All I can say is that I believe as I put my trust in Christ to sustain me with purpose, and even the energy and joy to find life worthwhile after these devastating losses. There’s’ something very encouraging about that.
E: Your second child?
N: Our son, Gabriel was born July 16, 2001. He looked like Hope and he was impacted in many of the same ways that Hope was. Like Hope, they both had, at about three months developed seizures which we had to medicate them heavily for. The sweet thing about Gabriel was, we weren’t shocked when he was born, like we had been with Hope. We didn’t have to reckon with the fact that he was going to die when he was born. That’s done, right?
E: That was a given.
N: We also didn’t have to research anything about this syndrome and we were prepared for what it was going to take to care for him. All of those things, that helped us to just begin his life, seeking to enjoy it, resting in it, and making the most of it. We thought actually he might be with us a little longer than Hope was because he seemed a little stronger than she was, but he was with us a few days less. He was with us one hundred and eighty-three days and then we said, “Goodby” to him.
N: We were once again back to a very quiet house and a family of three and it was like, “What just happen to us?”
D: Gabe’s life was a little different in that even more people were watching, I guess. The day of his birth there was a story about him in the Time Magazine dated for that day. It was on the News Stands there in the hospital in the gift shop. At one point, I went out around the nursing station and I saw several nurses kind of hunched over and they were actually reading this story. It was not a medical story, it was a religious story, and it was a piece written by the Religion Editor at Time Magazine at that time, David Bambina. You can still find it, I think, in the archives online, that he titled When God Hides His Face, which is taken from the Job story. Can faith survive when hope has died? It talked about our experience with Hope up until the time that Nancy was pregnant with Gabe and then the story came out in that edition. So it was interesting from the beginning of his life; I think we had a heightened sense that we had to fight to not treat his brief life as if it were a big sermon illustration or a TV show. Again, from the lessons of Hope’s life we learned to grab every moment that we could.
N: You asked earlier if grief had become our identity, and I think what we had chosen instead, and I think grief would be related to that, is that we see ourselves as stewards. As believers we get handed many different things that God entrusts us with. When we read the parable of The Talents in the Scriptures and they’re entrusted to us for one purpose and that’s for a return for His Kingdom. What has helped us from taking on that identity and what helped us pretty immediately during Gabe’s life, and the years since his death, is to see that this is what God entrusted to us. It’s not what we would have asked for. Even being here with you around the microphone, I mean David and I are comfortable in front of microphones so we further see this is what God has entrusted to us so we are seeking to be good stewards with it. Similarly, the Respite Retreat weekends we do for couples who’ve lost children, we do these retreats and the couples walk in and they’re so sad and over the weekend they experience the relief of being in a room where everybody in the room gets it and understands it. They’ve come from places where they feel like everybody walks on eggshells when they get near them and it’s so awkward to go into a crowd, and it’s as though they have written across their foreheads, “Those people whose child died,” and they get in this room and they hear other couples articulating things they have felt and thought and they think “Oh, I’m not crazy and I’m not alone.” Then by the time the weekends over they don’t want to go home, so that has been an incredible way for David and I to be good stewards. People ask us all the time, “Why would you want to do that?” Honestly, sometimes we’re driving out there on the weekend and we’re thinking we’re spending the weekend with eleven couples who are in so much pain. Why would we want to do that? But then on Sunday when we drive away we say, “That’s why.”
E: It’s ministry. Again, the Apostle Paul writes, “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort, who comforts us in all of our afflictions, so that we may be able to comfort those who are in any affliction with the comfort with which, we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ, but if we are afflicted it is for your comfort and salvation; or if we are comforted it is for your comfort which is effective in the patient enduring of the same sufferings which we also suffer, and our hope for you is firmly grounded knowing as you are sharers of our sufferings, so also you are sharers of our comfort. This is a passage I go to again, and again, and again, with life, and stuff, and loss, that if it was only that I get through this and learned something I otherwise could not have learned, what a pity. If I then can say, “Okay, Lord how can I be used to help the couples you’re ministering to, and others who are in grief?” That’s maturity in my book; that’s when we’ve grown beyond faith being a salve for my problem to now, “How do I live this life with some meaning beyond, “God explain it to me.”
One word for those couples who have lost a child; a couple who’s about to walk out of a marriage because they can’t stand it. They’re in the blame situation; if you hadn’t done this, if you hadn’t done that. What would you tell them?
N: In your incredible loneliness of grief, lean toward and give grace to that one person who ties you most closely to that child you have lost. Give each other a lot of grace to grieve in your own way and in your own timing.
D:Nancy and I actually wrote a little book together called When Your Family’s Lost a Loved One. It’s a great little book, mainly because it’s got contributors from all different walks and experiences of loss, but one thing that I wrote in there; it’s a tiny portion of the book, and it’s not worth buying the book for this, but it seems to really help guys and couples. It encourages men who are going through grief, fathers who are going through grief, and trying to get their wife through it and get themselves through it, and get their family through it is: just show up; step up; this is an opportunity to be that husband, to be that father, and you don’t have to get it perfect. Us guys, we like to know how to do stuff; we like to do it right. Just step up and be willing to walk through this with your wife and you’re not a jerk; you’re not doing it wrong. It will feel like that, but just keep going, keep moving, and stay present and be there.
E: Sometimes it’s just doing the next thing. It’s washing a load of clothes; it’s getting out of bed; it’s showering and shaving, it’s getting dressed; it’s running an errand. I mean, it’s just do the next thing because the list is too long and it’s too big of a thing to digest.
David and Nancy Guthrie, thank you for being on the broadcast.
N: Thank you for inviting us. It’s been a privilege.
E: Well I trust you’ve learned as much as I have about holding onto hope in times of loss. May the Guthrie story be a ministry to you of God’s faithfulness to them, to his children, and to you and me. Thanks again for listening to the broadcast. This is Michael Easley inContext.