Conversations with Faith-full Women:

Nancy Guthrie

Mercy: Nancy, I am so thankful to have this opportunity to allow you to share your heart-changing journey with our readers. Please go ahead and share your story.

Nancy: My husband David, and my son, Matt, and I went to the hospital for what we thought would be one of best days of our lives, and that was the day that I was going to give birth to a baby. I had the name Hope in mind for a girl for years. In fact, if Matt was a girl, he was going to be Hope. So our daughter Hope was born that day and immediately the doctors noticed what they called several small problems. Of course the most obvious was that she had club feet and they said, “You know, that’s no big deal. We can take care of that.”
That first night after she was born, our pediatrician came to our room and he said that he had made a list of a number of small problems that Hope had: she not only had club feet, but she was very lethargic and she wasn’t holding her temperature and she had a real large soft spot, extra skin on her neck and a number of other small things, and she wouldn’t suck. He said, “You know, sometimes when you see a lot of small problems, they’re really pointing to something bigger, so I’m going to have a geneticist come look at her.”
So the next day a geneticist looked Hope over and he came to our room that night and he told us that he suspected that Hope had a rare metabolic disorder called Zellweger Syndrome, something that we had never heard of before, and he said that likely Hope was missing something in every cell of her body that you and I have in every cell called peroxisomes. These peroxisomes are little sub cellular particles and the best way I know how to explain them is that they are like trash men and they have one kind of trash that it’s their job to take out of the cells and it’s their job to take long chain fatty acids out of our cells. He said that Hope was missing peroxisomes in her cells and therefore basically no one was there to take out the trash and the long chain fatty acids would build up in her system and become toxic, in fact, a lot of damage had already been done to all of her major organs: her kidneys, her liver and brain, and that those would continue to build up and that slowly her systems would shut down and that there was no treatment and no cure and that most children with that syndrome lived less then six months. As you can imagine, that was very hard news to take in. She seemed so beautiful.
So that night David crawled up in the bed with me and we cried and we cried out to God and we said, “God, we trust you.” Although I think in some ways it was more really saying, “We want to trust you, because it’s hard. How will we trust you and what will that look like?” And Hope’s life was, in fact, very close to what they said, Hope was with us 199 days, just a little bit more than 6 months and hers was a short and difficult life because the reality was her first day was her best, whereas most children are developing and growing and getting stronger, she was growing a little bit but getting weaker and weaker all the time and she developed seizures and we had to medicate her heavily for those.
The night came when, in the middle of the night David got up to check on her, (she slept in a little crib beside our bed), and she was cold to the touch and he said, “She’s gone.” And you know, Mercy, I had, of course, been sad a lot during her life, although I did my best during her life to enjoy her life because I thought, “I’ve got the rest of my life to be sad and I don’t want to miss enjoying her while she’s here by being consumed with sadness, neither do I want to miss it by focusing on asking God to extend her life or give her a life different than, obviously, what He’s created hers to be -- brief. I just want to throw myself into loving her and enjoying her and pleasing God in how I respond to this incredible disappointment,” so while I certainly was sad some during her life, I think there was a part of me that thought, “Well, I’ve already done a lot of my grieving, so maybe after she’s gone it won’t be as hard for me as it is for some people.” And right after she died, actually, I felt enriched and strong and wise like she had so enriched my life and I was so glad she had come and I felt strong, but you know, as these days went on, I got so sad, and felt so empty, and was so full of questions.
I’d looked at some various devotionals and I thought, “Boy, I wish there was something to read every day that would not just pat me on the head.” A lot of the Scriptures that people offer to hurting people are the Scriptures that I think sound like “God’s going to do what you want Him to do” and “He’s going to come through for you the way you want Him to” and I think we misuse those Scriptures sometimes and I think that anyone who’s been through something like what I’ve been through and realizes that, “Okay, I have to figure this out. God didn’t come through the way maybe I would have wanted Him to yet I know He’s still good and I know those Scriptures are still true and so I have to figure out how to make sense of this,” you know? So at about that six-month point, I remember sitting down and thinking, “I wish I had a devotional that would really help me understand the deep truths of Scripture and how they apply to someone in my situation of deep hurt and disappointment.” I thought, “someday I’ll be equipped to write that, but I’m not now,” so I just sat down and wrote down phrases that were meaningful to me and questions I had and Scriptures I didn’t understand and ones where I felt I had been given some understanding that were significant to me a the time and actually I just filed that away. And you know, one of the hard things about our experience with Hope was that, to have a child with that syndrome requires that both parents are carriers of the recessive gene trait for that syndrome. Kind of like blue eyes, to have blue eyes means that both parents carry that recessive gene trait and they have to get both of those recessive genes for that child to have blue eyes. Same thing to have a child with syndrome. That means that both David and I carry a recessive gene trait for that syndrome and that means whenever we have a child, that child has a 75% odds of being healthy, 25% chance that they’ll have the fatal syndrome. So when we had my son, Matt, who’s 15 now, he had those 75% odds and we still didn’t know and of course after we had Hope then we knew that any child of ours would have that 25% chance and as we thought about it, you know, there was a part of us that thought, “We loved Hope, enjoyed her and if we had another child that had that same syndrome, maybe that wouldn’t be the worst thing in the world,” but our lives aren’t just us and it had been such a difficult thing for our son, and such a difficult thing for our parents. I think in some ways it was almost a harder thing for our parents than it was for us. It’s very hard for parents to have to watch their children lose a child, and so we just felt like we didn’t want to risk putting our family and all of our friends through that again and so we took surgical steps to prevent another pregnancy. So, a year and a half later, I remember waking up one day and I was really late starting my period and as I laid in bed I thought, “You know, I’m not just late, I’m, like, really late.” David, knew I was thinking something, and he was like, “What’s on your mind?” I told him and I said, “Don’t worry, honey, because this is impossible.” I had to take him into work that day and I stopped and got a pregnancy test and really I took the pregnancy test, not to figure out if I was pregnant, but really just to rule it out because I had so much to do that day and it was bugging me in my mind and you know I thought, “I just need to rule this out so I can get on with my day,” and it was immediately positive. My heart began to pound and I hopped in the car and I went up to my husband’s office and I just looked at him and shook my head. We sat there together just going, “Whoa! Wow, how has this happened? What are we going to do with this?” We felt shocked certainly and we felt afraid because that was about a year and a half after Hope died and my grief was still so strong. I just wondered, “How can we do this again?” But at the same time we thought, “You know what? If God has overruled us and done this, He must have something significant He wants to do and we want Him to do it.” But we did decide that we didn’t want to share it with people, especially with our son Matt. We wanted to know the whole picture. We wanted to know if this child would be healthy or would have Zellweger before we shared it with anyone.
So I went through pre-natal testing. I had to wait a while before I could even do that and then had to wait another three weeks for the results and finally that day came when that same geneticist who had come into our room that night to give us that diagnosis with Hope called us and he said, “I have the results and the results are positive.” I said, “Positive, like good news? Or positive for Zellweger Syndrome?” He said, “Positive for Zellweger Syndrome.” So we knew at that point then that I would have a little boy and that he would also have this short difficult life. I think, while it kind of surprised me, in a way I was prepared for it because you don’t have to prepare for good news, it’s the bad news you feel you have to brace and prepare for. But honestly there was that deep sense of, “Alright, Lord. If You’re going to ask me to do this again, I don’t think you’d ask me lightly because I know You love me. So just don’t let me waste it. Use it. Use me. Make me, through this, someone you can use in a significant way and show Yourself in this.” And He has.
Our son, Gabe was born July 16, 2001. The day he was born, our story was featured in Time magazine. That was perhaps even the beginning of God saying, “I’m going to use this. I’m going to show myself in life and in death.”
So while I was pregnant with Gabe, in Bible study we were studying Matthew and one day we were studying the parable of the talents and you know, after Hope had died, because I’ve worked in the publishing world for 20 years now, a lot of people said to me, “You’re going to write a book.” And I said, “I don’t think so.” Honestly I had some things I thought I wanted to say, but having worked in publishing for so long, I’ve seen so many people have incredible experiences and then, in my view, exploit them for a book. And the truth is, Mercy, I wasn’t sure that I was above that and yet the thought that I might start down that road and discover that I had done that or was doing that was horrific to me. I just thought, “If I do that, and figure out along the way that I’m exploiting her, that will crush me and I don’t want to do that,” and I thought, “Okay, I can’t do anything.” But that day as our teacher was teaching the story of the parable of the talents, if you remember that story, God entrusts gifts, resources, to His servants and His only desire is that they invest them for a return for His Kingdom. And the servant that He’s displeased with is the one He gave the one talent to and that servant, when the master returns, he says, “You know, I didn’t want to take a risk. I was afraid I would do the wrong thing and so I didn’t do anything.” And I saw myself. All of a sudden, I just saw all that God had handed to me, He had given me the gifts of understanding the publishing industry and having the networks and contacts there. He had given me the opportunity to learn the Scriptures and to have some understanding of His Word and a love for His Word. He’d given me some communication gifts. Then on top of all that, He’d given me this incredible experience that gave me the credibility to speak to hurting people because I’ve been there. So all of a sudden, I just saw how much He had handed to me that I was afraid to do anything with. I went home that day and I started writing my previous book called, “Holding on to Hope,” which was really just my journey of studying the book of Job during Hope’s life to figure out, how does a person suffer significantly and question boldly and emerge from that with a life that could be described as good, like Job’s life was? So that little book of, “Holding on to Hope” came out on what would have been Gabriel’s first birthday, July 16, 2002.
Then, a couple years later, Tyndale and I were talking and they asked me if I’d think about writing a devotional for people who are hurting or grieving. I said, “You know, one time after Hope died I sat down one day and I made this list of things that I might write about if I were to ever write a devotional for people who are hurting or grieving. I think I might have that list somewhere.” I went home and found that list and I took that, and talked to a lot of hurting people, and I developed from that 52 weekly themes that I thought were significant to me and would be important to hurting people.
So I developed these 52 weekly themes worth of devotions, taking the Scripture and searching for what it has to say to the person who’s hurting deeply and that became “The One-Year Book of Hope.” It’s a one-year daily devotional for people who are hurting or grieving and it’s just my desire that God would use it in the lives of people who hurt.

Mercy: How is your husband and your son? What has the journey been like for them?

Nancy: Well, I guess we all experience it a little bit differently, don’t we? Actually, what’s really scary, Mercy, is that, I think, the statistics are for between 70 and 80 percent of couples who lose a child, their marriages end in divorce. Losing a child has a real shaking effect on a marriage and I’m grateful that David and I had a strong marriage and a strong foundation before this incredible loss. Rather than causing us to draw away from each other, I think our loss caused us to lean into each other and I’m so grateful for that. It’s also given us a shared mission. We have this shared mission of ministering to hurting people and God brings so many to us that we are able to minister to and listen to and share a little bit of what we’ve learned with. So I think that shared purpose has helped us and I think Matt shares that with us a little too. He doesn’t get up and speak with us or write with us, but he feels a part of it and he sees us have ministry with other people and, you know, I think it remains to be seen what the impact will be on his life with this. My prayer has always been that God would use it to make him a compassionate young man. Sometimes I see that, sometimes not so much. He writes about Hope & Gabe every once in a while for school things, you know, which is sweet to me. I think he wishes he had a brother or a sister, and I’m sad about that and I can’t fix that necessarily, but I guess though, Mercy, the most important thing is that we just love each other so much and we’re so grateful for each other and our house is full of joy. I mean, when I tell you this story and when I talk to people, all that people can see is the pain in it and there has been a lot of pain that I wouldn’t deny, but God has met us in this place and our lives are not defined by our loss. Our lives are defined by hope and joy. Our lives are defined by the gifts that the Holy Spirit has given in our lives of peace and joy and love. And when you hear our story you must think, “They must be a real bummer to be around,” but people who are around us wouldn’t say that. We are a lot of fun. We have a lot of fun with each other and I actually think that deep hurt expands our capacity for joy and just like we never thought we could hurt so deeply, we have more of a capacity for joy and we have that and so we’re good.

Mercy: I’d like you to share just about the various aspects of what you are doing today.

Nancy: I’m a mom to Matt, a teenage boy and that’s a lot of fun. I’m hoping I’m a better teenager mom than I was a toddler mom -- at least when I was a toddler mom, I was hoping I would be and I think maybe I am. I do a lot of Bible teaching, I just taught through the book of Hebrews at my church this fall and that was the thrill of my life and I really want to do a lot more of that. It’s been a dream of mine for many years to be able to teach the Scripture, a dream that always seemed kind of too lofty and unreachable to me, that I wouldn’t ever have enough understanding or personal credibility to be able to do that, and God has been bringing that about in my life and I’m grateful. I do a lot of retreat speaking, next weekend I’m going to Chicago to do a retreat on Hebrews. I do some retreats on Job.
And then I have a media relations business and I handle media relations for Christian Booksellers Association, the trade association for Christian retail industry. I also handle media relations for Anne Graham Lotz, who’s an incredible Bible teacher and has been a great friend and mentor to me. So that’s what I do professionally and I’m just working on a third book right now, we’ll see what happens with that.

Mercy: I know sometimes when we go through something that’s really traumatic, it’s easy to bury in work. I know a lot of people that struggle with that and, frankly, I’ve been there. Was that ever a temptation for you with everything that you had going on and how did you balance that?

Nancy: That’s a good question, Mercy. The day after we buried Hope, on that Sunday we came home after church and I remember saying to David, “I think I understand for the first time why people take drugs.” I never understood that before, because I’d never felt this much pain before and at that point I was almost willing to do about anything I could to not have to feel that pain. I remember that day I went to bed hoping I could just sleep it away and not have to feel it. And in the days that followed I tried to sleep it away, and eat it away, and I figured out you can’t do that. You can’t drink it away, you can’t busy it away, you can’t work it away, you can’t travel it away or escape it away and you just have to feel it. But besides just feeling it, you have to have to confront your feelings of loss with the truth of the Scripture. At every turn, when your feelings are telling you this is a tragedy and you will never feel good again, and life is over, God can’t love you, and your feelings are telling you those things, you have to confront them with the truth. What does the Scripture say? Scripture shows me that God loves me, it shows me the extent to which His love took Him: to the cross! The Scripture shows me that on the cross, if that great evil and death could bring about the greatest good of all time, which is our salvation, then it’s possible that God can bring about something good out of the things in my life that look like the worst evil and that there can’t be anything good in it. So those truths of Scripture inform our feelings.
I think in terms of work, work was at times a good diversion, but I guess for me it’s also been a tremendous release. There are a lot of people, a lot of women and men who lose children, especially babies, and especially those with miscarriage or stillbirth, and they never have the chance to talk about the children and it’s a huge need inside them, it’s a huge hurt inside them that they want to vent and let out and because they never have that chance, it festers inside them and at times their tears burst out, maybe bad times, or that hurt comes out in other hurtful, harmful ways. I guess I feel like I’ve been so fortunate in having these books and the opportunities to speak and talk about my children and in a sense keep them with me and add meaning to their lives and I’m so blessed by that. What a great opportunity for that.
So my work hasn’t been a way to shove it away and not feel it, it’s been a way almost to bring it to the surface and release it. And not just, “splat,” release it, but see God redeem it. So I’ve been very blessed with that opportunity.

Mercy: In closing, would you share a word for someone who’s currently walking through a really dark time. Maybe they are at the sleep it away, eat it away, push it away stage and just don’t see the light at the end of the tunnel…

Nancy: Well, I would say to them, I got some really good advice from a counselor long before I had Hope. It was another loss in my life, a job loss, and it was so hard for me. I remember him saying to me, “When you start to feel sad, just let yourself be sad.” I think that was more about the loss to come than that loss at that time. You know, there are a lot of times that, I think especially those of us in the church, we tend to think that tears reflect a lack of faith, that if I was just a strong Christian, a real believer, I wouldn’t be so sad and that’s not true. Tears don’t reflect a lack of faith, tears are a way that God helps us release the deep pain of living in this broken world, because it’s broken and we feel it, we experience it, and God has given us tears to release the pain of living in this broken world, but we don’t have to stay there forever. We feel that hurt and we release that hurt with our tears, we release it to God in His presence. Rather than railing against Him, we just lay it out for Him and we ask Him, “Meet me here.” And, you know, Mercy, we say we want to know God, and if we really want to know God and to know Jesus, like Paul said, “I want to know Christ,” well, then we want to know Him in the fullness of who He is and Isaiah tells that Jesus was a man of sorrows acquainted with grief and in our deep griefs … that’s a way we come to know Him that we never have before. So I would say to that person who’s hurting deeply, “Don’t miss the opportunity to know Him in a way you’ve never known Him before because of your deep sorrow. Don’t shut Him out because you think He should have done something different; He should have kept you from experiencing that abuse, or that accident, He should have kept you experiencing the diagnosis that you have, or losing someone you loved. Recognize that He’s hurt deeply too and He understands and this is an opportunity for you to know Him in a deeper way. Rather than just seeing Him as this God who owes you the life you want, you can enter in to a deeper life with Him because of your loss, so don’t miss the opportunity.

Mercy: Amen. That’s … that’s amazing. Thank you.

Visit online: www.nancyguthrie.com

Note from Mercy Hope. Not only have I been personally challenged and encouraged by “The One-Year Book of Hope” but I have also shared it with friends who are hurting. Nuggets of truth that I have gleaned from Nancy’s words have illuminated areas that were once gray in my understanding of God’s word, forever impacting my Spiritual life, and equipping me for the challenges that lie ahead. “The One-Year Book of Hope” is truly a priceless resource that points the hurting soul to light and hope.
 

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