Grief 07: Infant Loss—An Interview with Nancy Guthrie Transcript
This transcript has been edited for clarity.
Emily Jensen: Hey, friends—Emily here. Welcome back to another episode of Risen Motherhood. If you're just joining us, we're almost to the end of our Grief series where we've been exploring different sorrows and hardships in motherhood. On today's episode, Laura and I are joined by Nancy Guthrie as she shares her story of infant loss along with the healing hope and encouragement she's found in the Lord throughout the years.
Nancy teaches the Bible at her home church in Franklin, Tennessee as well as at conferences around the country and internationally, including her Biblical Theology Workshop for Women. She's the author of numerous books and the host of the Help Me Teach the Bible podcast at The Gospel Coalition. She and her husband founded Respite Retreats for couples who have faced the death of a child and are co-hosts of the GriefShare video series. You can find out more about Nancy, including links to her books and the Respite Retreats in today's show notes.
Ahead of the show, we do want to let you know that we're discussing the topic of infant loss in a very raw and transparent manner. We're so grateful that you're tuning into the podcast today, and we do pray that it offers you hope and comfort. We also want to encourage you to exercise wisdom in deciding if this content is the best fit for you in your current season and stage of processing. This episode isn't meant to give personal advice or be a substitute for professional help, so we hope you'll reach out to a trusted friend, mentor, counselor, or medical professional that can speak into your specific circumstances as needed.
Okay, let's jump into today's show.
Laura Wifler: Well, Nancy, thanks so much for joining us on Risen Motherhood today.
Nancy Guthrie: Well, thank you guys for inviting me. I always love talking to you guys.
Laura: I know. We love having you back to Risen Motherhood—one of the few people that we have had two times on the show, but we know you have tons of wisdom to share, so we're excited to talk with you. Can you just give us a quick flyover of your family and what you're up to these days just in case there might be somebody listening who's not familiar with your work?
Nancy: Certainly. I live in Nashville, Tennessee with my husband David, and my husband David has a company. He publishes kids’ musicals for the church, a company called Little Big Stuff Music. They create a Christmas musical every year for fourth through sixth graders to perform. Our son Matt who's 32—he doesn't live here, but he lives in Nashville, and he works for David, which is really fun. That means that most days here at our house, the three of us are able to have lunch together, which is really fun.
I spend most of my time preparing and then teaching, and a lot of those become books as well. My biggest thing since about the fall of 2019 is to travel around to offer the Biblical Theology Workshop for Women. I've done about fifty of those since the fall of 2019. This last year and into next year, I'm doing a lot internationally as well as a lot domestically. It's just so much fun for me to go places and have women come who are hungry to know their Bibles better and have a better sense of how the Bible fits together.
As I present some basic tools of understanding the storyline of the Bible, getting a good grasp on it, and being able to trace themes that the divine Author has written into his book—these events are just an explosion of joy. When I go places, and if people already love Christ and they love the Word, and then they get introduced to Biblical Theology, it causes them to love him more as they see him through new angles. So, I just love doing that.
Emily: Well, we are grateful for and have benefited from your work in that and your faithfulness in that. I know Laura and I have both personally done your Bible studies, and I'll never forget the one with the lamb on the cover.
Nancy: The Lamb of God, yes.
Emily: The Lamb of God.
Nancy: Yes: Seeing Jesus in Exodus, Leviticus, Numbers, and Deuteronomy.
Emily: I was just a young, little—a twenty-something—and reading, and light bulbs were just going off as you were sharing, so definitely God has been so gracious in using you to point out those truths. Switching gears here, kind of abruptly; we wanted to have you on Risen Motherhood again to talk about a very specific topic in our Grief series, because, even though some people may be more familiar with your recent writing and your Bible studies, I think it's right that you first got started writing after a season of grief in your life. Would you be willing to briefly share your story of child loss and give us the flyover of what happened in those years?
Nancy: Certainly. When our son Matt was eight years old, I gave birth to a daughter named Hope. We headed to the hospital anticipating everything to be just hunky-dory and not anticipating what would happen. In that, when Hope was born, immediately the doctors noticed what they called a lot of little things that weren't quite right. She had club feet, she had a real large soft spot, she had extra skin on her neck, her hands turned slightly out, and she was very lethargic. She wasn't holding her temperature or holding her weight, and she barely cried.
A geneticist came and examined her, and so, on her second day of life, he came into our hospital room and told us that he suspected Hope had a rare metabolic disorder called Zellweger syndrome—something we had never heard of, and most of your listeners probably haven't heard of it. It meant that she was missing this tiny subcellular enzyme that you and I have on every cell of our bodies. Because of that, a lot of damage had already been done to all of her major organs, especially her liver and her kidneys and her brain.
The doctor told us that there was no treatment and no cure and that most children with that syndrome live less than six months. He handed to us two pages Xeroxed out of a medical textbook that had—in very medical terms—everything that was wrong in Hope's body and how that would progress and then several postmortem photos of infants with that syndrome, which—honestly, I couldn't look at those sheets for about a week. It was too much reality to take in at one time.
Hope couldn't suck or swallow, so there at the hospital, we learned how to feed her with a tube. Hope couldn't hear and she couldn't see, and so in many ways, her life was very limited. She developed seizures at about three months, and we had to medicate her for those. While she didn't move much before, after those began and we medicated her for those, she didn't move much at all. In so many ways, her life was really difficult, but at the same time, her life was really rich.
There's something very special, actually, about knowing that days are numbered and that her life would be short. For me, it just really pushed me to make the most of every day that we had with her. I remember a couple of weeks in, it really hit me; it was like—we know everybody's going to die at some point, but this was different. This was like, no, we don't know how long we'll have with her, and there was the reality of: it may be very brief. I realized, "Okay, so very soon, either I'm going to go to her crib and find her dead or she's going to die in my arms." Both of those realities were so difficult for me. Honestly, they just inspired a lot of fear. I remember in that time, though, having a sense of, "You know what? I cannot let myself get overwhelmed with sadness now because, if I do, I will miss her life, and then I'll regret that the rest of my life." I just thought, "I have the rest of my life to be sad about this." As much as possible, we just tried to make the most of her life.
Honestly, the time was really rich. We had more people in our home for a meal than we've ever had. People would say, "I'll make you a meal." We would say, "Well, bring enough for yourself and have dinner with us." Because of what was going on, our conversations weren't trite. They were significant, which I think still I just don't enjoy small talk. [Laughter] We connected with people we had never before. It was an amazing time in many ways, but it was also incredibly difficult. My main prayer was, "Lord, just give me the grace to accept the number of days that you give to me with her."
We had plenty of people around us who were praying for a miracle and were suggesting to us that if we really had faith, we would be too. But we just accepted—to us, there was a sense that God had already made a decision about her life, and we knew how profoundly she was impacted at the subcellular level. And so, our prayer was just, "Lord, give us the grace to make the most of her days and to accept the number of days that you give to us." The Lord gave us 199 days with her.
Then one night, David got up in the middle of the night to check on her, and she was cold to the touch. He came over to the bed and he just said to me, "She's gone." And I’m a person—I plan ahead and I work ahead, and I had this idea somehow in my head that maybe grief wouldn't be as hard for me as it seemed to be for other people because I had known she was going to die, and I had been sad some during her life.
I had this crazy idea that, somehow, I was getting some advanced work done that would lighten the load once that day came. Grief just doesn't work that way. There is a big difference between knowing someone's going to die and them just being gone. Gone. In those days that followed her death, the only way I know how to describe it is just such a profound sense of sadness, of missing her, of disappointment. I had really looked forward to having a daughter who would grow old with me and be my friend in my old age, and I realized I wasn't going to get that. I was just really sad.
I remember standing up about three months after Hope died in front of the choir at our church, and I just said to them, "I'm not depressed, and I'm not losing my faith. I'm just sad. I need some time and space for you to let me be sad," which was a great gift that many people gave me because the heaviness of grief was there. I often say it was like a boulder on my chest—that heaviness, that sense where I could just—I always felt like I could just barely get my breath because it was heavy for a long time.
Laura: Thank you for sharing with us, Nancy. It was so vulnerable and so kind of you to let us even see some of that and to hear some of that and how you processed through that and were there. I just can't imagine the sorrow that probably still remains to this day. I'm curious if you could help—for any mom who identifies much too deeply with what you're sharing, would you be able to talk through some of the typical grief patterns that moms do experience? We know, obviously, no two journeys are the same, but are there some things that you would say, "Hey, these are some patterns that we sometimes see after a mom has lost their child, in the midst of their grief" that would be helpful to know or be aware of?
Nancy: Certainly. I think a very significant thing for moms is that it's our grief that keeps us feeling close to our child. There is a sense in which the grief is an agony, and at one and the same time, it's comfort. That might sound crazy, but it's true that we have the sense that if we're not sad anymore, that we feel the child's slipping away even farther. That can be a real tyranny because it keeps us from wanting to feel better. It keeps us from wanting that load and burden of grief to lighten because it's what keeps us feeling close to our child, and we're so desperate to feel close to our child.
I often tell moms, "You're going to be sad for a while, and it might get worse before it gets better, but a day is going to come—at least I hope it comes—that you are willing to allow grief to lessen its hold on you." For a while, it's just so consuming. You see everything through that lens, and it's the first thing you think about in the morning when you wake up and you remember, and you think about it through the day, and it's just so consuming.
A day comes—or at least I would say it must come if you want to have joy again and if you want to have something to give away to the living—then a day has to come where you are finally ready to put grief in a place. It's not like it disappears, but it's almost like you say to the grief, "You know what? I recognize you're going to be my companion forever, but you're not in charge anymore. I want to live, and I want to have joy. I have maybe other children or other people in my life that I want to have energy for, and so I'm going to stop giving so much of myself to the grief and give it to the living."
You come to a place—at least I hope you do—where you realize that your child who has died really can't gain anything anymore from all of the energy that you're pouring into the grief. Maybe there are other people who can gain from that. That was really the case for me because I had my son, Matt. I just realized at one point, when you have other children—for parents who have lost a child, you have to make that decision to make sure that your living children know that they're worth living for.
Children can sense that, in a sense, they not only lost a sibling, but they lost their parents because their parents are lost forever to grief. Perhaps the child who died gets idealized, and there's a big focus on honoring that child, remembering that child, and it's just so much. A child can just think, "I understand, Mom and Dad, that you'll be sad about that, but can you not find any joy in the fact that I am here?" Those are big, challenging things for grieving moms.
Emily: Thanks for sharing some of that. Just another question would be how that affects a mother's relationship with God and some of the questions that might arise or doubts that come up. Did you have any specific questions of doubt or struggle that you wrestled with with the Lord through that season?
Nancy: I had so many questions—so many questions. I wouldn't say that I doubted God. I didn't struggle with anger toward God. I think I was really helped that, right before—even in just a year or so before Hope's life and death, really—I'd been working on a project that was all about the sovereignty of God. In the Bible study I was in, that was emphasized. I went into that with that solid foundation underneath me that God is in control, and he is in control for my good and for his glory.
It's not like all of that just answers all the questions, but I think having that solid foundation underneath me, that it was more like, "I know that's the answer. I've got to figure out how to put the pieces together, but I know underneath all of this, that there is that solidity and that I can trust him." That was there for me, but I think everybody who goes through grief has the same question. That's the question, "Why?"
I told you about the life and death of Hope, but the really stunning thing was that, a year and a half after Hope died, even though we had taken surgical steps to prevent another pregnancy—because we then knew that both David and I carry the recessive gene trait for that syndrome—a year and a half after Hope died, I discovered I was pregnant, which was shocking, to put it mildly, and scary. If I had asked God, "Why" the first time around, which I did, now it was, "Well, why again? Was there something I was supposed to learn that first time around that I didn't learn—I just need the remedial course—or is there some purpose behind you calling us to do this again?"
Honestly, in those early days, I was just like, "Wow, you're going to ask me to do this again?" Because after going through prenatal testing, we knew we were going to have another child—a son this time—who would also have the fatal syndrome. I just remember saying to him, "Okay, Lord, if you're going to ask me to do this, then I'm just begging you to use it. Accomplish everything you intend in it and through it, even if that's just in me."
You see, I think a lot of times when we have the questions "why," we spend a lot of time looking outside at circumstances. We're looking for something good that comes about as a result of the loss, that we can point to and that we esteem to be good enough to have required our loss. We look around for things in our circumstances that we deem to be a good enough thing that we relate the loss to, and we want to be able to say, "Oh, God was doing this."
There's a sense in which we can't trust that he had a good purpose in it unless we can identify what it is, even though the Scriptures basically just call us to trust him—knowing that we may never see clearly in this life the myriad of purposes he has and has had in the way he oversees events in our lives and in the world. But I came to realize: if I can't see it in my circumstances to get an answer to "why," and I'm not really looking for a philosophical answer, I need a Scriptural answer. What is God doing? It really sent me to the Scriptures to try to understand this.
Many people will say that you can't expect to get an answer to "why" in this lifetime. I actually don't agree with that. I might not be able to get those specific circumstantial questions, but I can see in the Scriptures—to get a Scriptural answer to "why." To me, the most significant answer to the question, "Why have I had two children born with this fatal syndrome who each lived a short time?"—I found the answer in Genesis 3:15. In Genesis 3, we see Adam and Eve. They rebel against God, and because of that sin—the impact of sin, the curse that comes upon the serpent and the ground that impacts the man and the woman—I see that's why there's suffering in the world.
The beautiful thing I discovered was not only does Genesis 3:15 explain to me why there is so much suffering in the world as the result of sin—even the suffering; it's right there in Genesis 3:16 that Eve will experience pain in childbearing. That's not just the pain of labor and delivery; that's the pain of birth defects and the pain of miscarriage, stillbirth, and the pain of being a sinner, parenting a sinful child in this world. That's all the mixture of pain in bearing children.
Not only do I see the answer to "why" in terms of the suffering, but I see a sense of purpose in where that's headed and hope—because right in there on Genesis 3:15 where it talks about this conflict that's going to be between the offspring of the serpent and the offspring of the woman, it also says that there's going to be an offspring of this woman at one point who's going to crush the head of evil—who's going to put an end to evil and suffering because of that evil.
That to me was a beautiful thing that I could get an answer to "why." Ultimately, why have I had two children who were born with this fatal syndrome? I would say to you—because the impact of sin in this world has permeated all of creation—that the curse that came upon this world has impacted even my genetic code so that my genes don't work right, but that also, that's not the way it's going to be forever. I'm in this in-between time—this in-between time when Christ became a curse for us on the cross is what Galatians 3:13 says to us.
He took this curse of sin upon himself, but now I'm in this in-between time, between when he accomplished everything on the cross to deal with the curse and when he comes a second time to eradicate the world of this curse. We read in Revelation 22:3 that, in the new creation—it says, "No longer will anything be a curse." That's when what was promised way back there in Genesis 3:15 of this One who will crush the head of the serpent—when that's done for good, and we experience the impact.
You and I—we find ourselves in this world where we can expect to experience loss. It doesn't mean that God has abandoned us. It doesn't mean he's mad at us. It doesn't mean that he has failed us. It means this is where we are in redemptive history. We are waiting for that impact of the curse to be fully dealt with. One day it will be. I have no doubt of that. At this point, I realize I'm going to have a lifetime of separation from my daughter Hope and my son Gabe. I often feel that profoundly.
Next week Hope would be 24. I feel it. I wish she was here, but I know the day is going to come when I'm going to die, and they're going to put my body into the ground to turn back into dust, and my soul, my spirit, is going to go to be with Christ. I'm going to enter into the presence of Christ. I believe Hope will be there, and Gabe will be there, and it's going to be wonderful to see them, but that won't be the best thing. The best thing is that we're going to be together gazing at the beauty of Christ. That's the best thing. That's the thing to really look forward to.
Even then, we'll still have something to look forward to. We'll look forward to the day when Christ returns because 1 Thessalonians says that we're going to return with him. He's going to call that dust of our bodies out of the ground, and he's going to give me and Hope and Gabe and David and Matt and then my soon-to-be daughter-in-law, Amanda—we'll be joined once again body and soul, and we'll be given bodies that will be fit for living forever with him on a renewed earth.
That's the future that was set in motion even way back there in Genesis 3:15. That's where my hope is set. That brings me joy and rest. I believe it's true, and it has the power to—it doesn't take away my grief, but it shapes my grief. It gives me perspective in the midst of my grief so that I can tell myself the truth. When we're grieving, we have all of these voices that talk to us from inside ourselves and from our culture and from all around us. These voices say things like, "You will never be happy again." These voices say, "God has done wrong by you." We listen to what's said, but then we have to go, "Is that true? Is it true or is there some power to push back on that?"
I would say to someone who is grieving—especially the loss of a child, the loss of an infant—I know there's a huge empty place that you feel like can never get filled up. And maybe you are wondering right now if you are going to hurt this much forever because the pain is so great. I would say to you: there's going to be a broken place inside you as you go through this life, but that doesn't mean that there's no possibility for joy. That doesn't mean that your grief always has to be as heavy and controlling as it is now. I want to say to you that God is a healer. He really does heal. He heals brokenhearted people. He restores joy in the midst of devastating sorrow.
I would say to you, especially if it's early on, let yourself be sad. Just let all of those tears come out. Maybe find a place in the house where everybody in the house doesn't have to listen to your tears because they love you, and your tears sound like pain, and your pain hurts them. Find a place to let out some tears maybe, and just let them out, but then also anticipate joy. Pray and ask God to give you an openness to returning joy and normalcy because he is a healer, and he will do a healing work in your life.
I hope you can accept that from me because I'm saying to you: he has done that healing work in my life over these years of losing two children. He has done such a work of healing—healing so that I can help other people and healing so that my grief isn't the first thing I think about every morning, and it doesn't dominate all of my interactions with other people and relationships. This is what I would wish for you, this is what I would pray for you: that you would welcome the healing work of God in your life in the midst of your grief.
Laura: Thank you, Nancy. I kept soaking up pieces of what you were saying, even as someone who hasn't experienced child loss but knows other griefs. That little pieces of what you were saying I kept clinging to and grabbing, and it's just so encouraging to me because—you're right, there are a lot of universal feelings we experience in grief. I just want to say thank you for encouraging me. I know this will be incredible for so many Risen Motherhood listeners at differing points of their journey.
I know that one thing that you have really given much of your life to as well is something called Respite Retreats. There are some fun new things happening with that. It is also an incredible place for a mom and a dad to go who have lost one of their children. I have had personal friends who have also attended a Respite Retreat, so not only do we know about it from you but also just firsthand experience of hearing how incredible and healing it is. Can you tell our listeners a little bit about that and what goes on there and why they might attend one?
Nancy: Yes, I would love to. In 2009, my husband David and I started holding weekend retreats for couples who have lost children—children of any age, all different kinds of causes of death. Our last one was a couple of months ago. We've now spent the weekend with about a thousand grieving parents. We've had forty-four Respite Retreats. At those weekends, couples come together, and they get to talk about their children. They get to talk about what they're really struggling with in the midst of a loss. We look at the Scriptures together. Amazingly, what most people believe could never happen is we laugh a lot together.
On Friday, some people want to turn around—they're like, "What are we doing? Why would we even be going to this?"—and then by Sunday, they don't want to leave. The main power of it is being in a room with ten or eleven other couples who get it— that you don't have to walk on eggshells around because they really get your loss. And you can talk to them about things that you would never talk to people about in some other social setting. Those have just been incredible. It's been an incredible ministry for us.
David and I did decide recently that this last one we just did will be our final one, mainly because we've been mentoring some younger couples to host these retreats. In fact, over the last couple of months, there was a Respite Retreat at the beach in Gulf Shores, Alabama, led by Casey and Melissa Belgard. They had twelve couples who spent the weekend there on the beach, which is a beautiful setting, and then Respite Retreat at the River led by Gabe and Monica DeGarmo outside San Antonio, Texas—they just had a retreat this fall. These two couples are continuing to host Respite Retreat.
If you go to my website at nancyguthrie.com and then choose Respite Retreat, you'll find links to see those retreats, but those have just been an incredible blessing to us. It's so fun to me. I come to love these people over the weekend and stay in touch with so many of them through the years, but the best thing about it for couples is just getting time away as a couple to focus on how they're doing working through this loss and how they're doing as a couple and how they're doing in regard, perhaps, to their other children and with the Lord. And to get to really connect with other people who get it. That's the beauty of it.
Emily: We're so grateful that you took a moment to share about that, and we hope that these Respite Retreats and the new iteration that you have of them would be a blessing to listeners as they connect with people in real life.
I know that's something that Laura and I talk about a lot at Risen Motherhood of—it's one thing to go on social media and to find someone you really love to follow and you connect with their reels or you connect with their articles that they write, but it is totally different to get face-to-face with people in real life where you can hear about the work that God is doing and where you can look at the Scriptures together. You can pray together, and you can have that mutual experience and see what God does and see what healing and direction and guidance and things that he brings through those in-person connections.
I just love that you guys do that and that you're also discipling others to carry that on and multiply that. It's such a gift.
As we wrap up the show here, Nancy, you've given so many wonderful encouragements, but do you have just a final word of encouragement that you would give to a mom who's in the midst of her grieving even today?
Nancy: I would say to you: if you are in that really low place of grief, there's a voice you need to listen to. I mentioned earlier there's this voice inside you that's screaming out to you, telling you you'll never be happy again, pointing at that empty place in your heart and in your family and at the dinner table—that is telling you it was unfair, it wasn't right, God has not done right by you, he can't be trusted. And so, you can listen to that voice, but it will lead you only to despair and alienation from God.
God is speaking to you. When we open up the Bible, it's not just something he said to someone else; it's him speaking. We see that especially in the book of Hebrews, where he will quote the Old Testament. He would say, "The Holy Spirit says"—that's because the Bible is the living, active Word of God.
I know that, as you open it up at times, you're looking for it to say something you want to hear, or you get to a certain part of the Bible and you think, "This has nothing to do with my loss, and I'm not really interested." But I just want to encourage you to open up God's Word every day if you can, even if it's just to read a bit of a Psalm. I want you to open up God's Word and anticipate that God will speak to you, that he will reveal himself to you.
We often come to the Bible with all these questions we want answered, and the Bible answers questions that you and I don't even know enough to ask. It tells us what we most need to know, and you and I need this voice outside of ourselves. There's a voice that speaks comfort, yes. Maybe even some correction. Maybe a revealing of more about who God is that will enable you to trust him more.
I would just say to you, in this time where maybe you think, "I'm not sure I can even trust God. Why would I open up my Bible to listen to him?" I just encourage you to open it up and hear him speak. Then don't just close it; make it a conversation. Wherever you are in the Bible, use those words to develop your prayer back to him. When you read, "The Lord is my shepherd and I shall not want," maybe that becomes to you a prayer in saying, "Lord, I need you as a shepherd. I feel like I am out on my own, but even when I read this, I have everything I need. Right now I am feeling like I don't have everything I need—I want my child with me here right now—and so I need you to press this truth deep into my soul and reveal to me that you are what I need, and that you will lead me besides still waters and that you will restore my soul because right now my soul is so sick. It's so desperate. Lord, would you bring the restoration to my soul that only you can bring?"
Do you see what I'm doing? I'm working through Psalm 23, and I'm turning it into a conversation. If you struggle to talk to God in the midst of your loss, maybe that's a place to begin; listen to him and then turn that into a conversation with him to get that conversation going again.
