Holding On to Hope

A Pathway Through Suffering to the Heart of God

Q. About three years ago you went to the hospital to deliver what you thought would be a healthy baby girl, but on her second day of life a geneticist told you he thought she had a rare metabolic disorder called Zellweger Syndrome. What is that?

A. Children with Zellweger Syndrome are missing an essential subcelluar particle called “peroxisomes,” which rid their cells of toxins. The doctor explained that because Hope was missing peroxisomes, the toxins would build up and her systems would shut down. He explained that children with this syndrome usually live less than six months. No treatment. No cure. No survivors.

Q. What was Hope’s life like?

A. Her life was limited and brief. She was very lethargic and couldn’t hold her head up. She couldn’t suck, so we fed her with a tube we threaded down her throat and eventually a tube directly into her stomach. Her brain was severely damaged, and she couldn’t see or hear or respond. The reality was, that from the day she was born, she was declining. When she was about three months old, she began having seizures, which grew more and more significant until her death when she was a little over six months old.

Q. What causes Zellweger Syndrome?

A. To have a child with the syndrome requires both parents to be carriers of the recessive gene trait for the syndrome. And so whenever two carriers have a child, there is a 25% chance that the child will be born with Zellweger. We didn’t know we were facing those odds when we had our son Matt, who is 11, or when we had Hope. But after Hope was born, we decided that while we might be willing to risk another pregnancy if it were just David and me, we did not want to risk putting our son and our parents through such a sorrowful experience again. So David had a vasectomy.

Q. But then you got a big surprise, didn’t you?

A. Yes. We were shocked to discover about two years later that I was pregnant. We were excited as we faced the possibility of having another healthy child to raise and enjoy, and afraid as we considered the possibility of loving and losing another child. At about 3 months I was able to go through pre-natal testing, and we discovered that this child would also be born with the fatal syndrome. Gabriel Johnson Guthrie was born July 16, 2001, and brought us sixth months of joy as we endeavored to savor every day we had with him. His condition was very similar to Hope’s, and he was with us one day short of six months.

Q. So now you’ve buried two children, a nightmare that no parent wants to even imagine experiencing. How have you gotten through these past three years?

A. About eight years ago I made a commitment to study God’s Word through Bible Study Fellowship, a weekly intensive Bible study class, and it built in me a foundation of understanding about who God is and how he works. In fact, we were studying the story of Job about two weeks before Hope was born, and I remember marveling at how Job responded to tragedy in his life. I wondered if I would respond that way if tragedy came in my life. After Hope was born, I went back to Job to look more closely at his example. I wanted to find out how this man went from profound pain to profound blessing—how the last verse of his story could describe him saying, “He died, having lived a long, good life.”

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Q&A, Holding On to Hope, page two

Q. What did you learn from Job that helped you?

A. The first verse of Job’s story tells us that he was a godly man—that he was blameless. And as God was looking for one man who would be faithful to him no matter what, he chose Job. Then, a series of messengers came to Job telling him that all of his cattle and property had been destroyed, and then that the building his children were having a dinner party in had collapsed and they were all dead. And the first thing Job did was tear his robe in grief. The first lesson I learned from Job was that tears do not reflect a lack of faith.

But grief is not all that is in his first response—the verse continues, “Then he shaved his head and fell down to the ground before God.” Amazingly, Job worshipped God. It can be very difficult to truly worship when you’re hurting deeply. But when we worship, we get our eyes off of ourselves and our problems. We focus them on God, and it puts our difficulties into proper perspective.

Q. It seems that oftentimes when something bad happens, people have a couple of responses – they get angry with God, and then they ask “Why?”

A. That is what is so amazing about Job. The scripture tells us that he “did not sin by cursing or blaming God.” Job feared God, and so even though he questioned God in a quest to understand why he was suffering, he did so without pointing a self-righteous finger toward God. He questioned God boldly, but with firm confidence that God would redeem the pain in his life.

Q. But at many points, Job says he just wants to die, doesn’t he?

A. Yes, especially after he developed all of the itchy, oozing sores all over his body. He was in a deep place of despair, desperate to hear God speak. And then, in a voice from out of a whirlwind, God spoke. What I would expect is that God would answer all of the questions from Job and Job’s pious friends and set the record straight on all of the fine points. But that isn’t what God did. He revealed Himself. And in the midst of his awesome presence, Job’s questions simply disappeared.

Q. It is at this point in Job’s story that you write in your book, Holding On to Hope, that Job discovered what made his suffering “worth it”—the same thing that has made your suffering, in a sense, “worth it.”

A. Job says, “My ears had heard of you, but now my eyes have seen you.” He’s saying, “I used to just know about you, but now I really know you because I’ve experienced you for myself.” Job discovered a more intimate relationship with God through his suffering than he could ever have known in a continued life of comfort and ease. And that is God’s purpose in allowing suffering into my life and your life. His purpose is not to punish us or hurt us, but to draw us to Himself.

Q. Why did you write Holding On to Hope, and who is it for?

A. I wrote the book as a gentle invitation to those who are hurting. I invite them to join me in following in Job’s footsteps so that he can show us how to suffer greatly, question boldly and come to a new place of intimacy with an understanding of God. So many times, when people we know are hurting, we want to do something for them. I hope people will give them a copy of my book and that the book will help them work through their questions and pain on a deep level. I hope this book will enable readers to emerge from their suffering with a deeper, richer relationship with God.

Q. What is the most important message you want this book to give to people who are hurting?

A. Instead of urging them to pray away their suffering, I want to encourage them to look for God in the midst of it. If God has allowed suffering into your life, it is for a significant purpose. So rather than just focusing on getting rid of it, seek to discover God’s purpose in your pain, to submit to his plan and his purpose, to please him in how you respond to adversity. You have an incredible opportunity to glorify God just by your simple trust in him during these dark days. He will bring you from the darkness into the light, so look for him in the darkness. The last thing I want to do is offer easy answers and simple platitudes.

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March 2002