hope-more than a name

nancyhope-bw-photoAs I sat, watching the “Joni and Friends” TV show which featured David and Nancy Guthrie, tears rolling down my cheeks, I was deeply touched by this couple who entered into very difficult circumstances that they did not chose but who faced them by digging deeply into their faith in knowing that God had not abandoned them in their sorrow but He had enriched their lives in and through their heartache and suffering.  I contacted Nancy about sharing their story because through sharing how she and David lost “Hope,” their story can be used to show how through God’s grace, they’ve had their hope redeemed.

Story submitted by Nancy Guthrie

I had a very long to-do list that day in early December.  I bought the pregnancy test so I could rule out the nagging possibility and get on with my day and my list.  “That’s impossible!” I said to my husband as I dropped him off at his office that morning, assuring him that there was no way I could be pregnant.  But I went straight to the drugstore to buy the test.  David had had a vasectomy two years earlier, so surely I couldn’t be pregnant, I said to myself as I drove home.

The decision to have a vasectomy had not come easily.  It came amidst the heart-ache of loving and losing our daughter, Hope, a year and a half earlier, who was born with a rare metabolic disorder called Zellweger Syndrome. We had never even heard of the syndrome until the geneticist came to my hospital room to deliver the bitter news of her diagnosis on her second day of life.

The doctors had been concerned by several “small” problems evident at birth-Hope had club feet, she was very lethargic and unresponsive, she had a flat chin and a large soft spot, and she would not suck. That night, the doctor explained that because Hope was missing something in her cells called peroxisomes, which rid cells of toxins, her systems would slowly shut down.

And then he dropped the bomb: most babies with this syndrome live less than six months. Already a lot of damage had been done to her major organs. She likely couldn’t see or hear. No treatment. No cure. No survivors. I felt like the air had been sucked out of me. While he was talking, I let out a low groan.

Hope was with us for 199 days. We loved her. We enjoyed her. And shared her with everyone we could. We held her during her seizures.

Then, we let her go.

To have a child with Zellweger syndrome requires that both parents be carriers of the recessive gene trait for the disorder. So after we had Hope, we knew that any child of ours would have a 25 percent chance of being born with the fatal syndrome. And even though we thought we might be willing to take the chance, we felt we could not risk putting our elementary-age son, Matt, and our parents through such a sorrowful experience again. So we took surgical steps to prevent a future pregnancy.

Evidently, it didn’t work.  There were two blue lines.  The test was positive.

With my heart pounding, I hopped in the car and drove back to David’s office, and simply shook my head “yes” when I walked in the door.

Sitting there shaking our heads, we both admitted there had been days when we each wished we had never gotten the vasectomy, days when our family did not seem complete, although we generally came back to believing we had made the right choice. We confessed our fear as we considered what might be ahead. Could God be asking us to walk through the heartache of loving and losing another child?  Can we do it again? we wondered. We were still hurting so much from losing Hope.  Could we say “yes” to that kind of heartache and loss a second time?

But we also felt a cautious sense of joy as we considered the possibility that we might have another healthy child to raise and enjoy that we had not expected.

A month later I was far enough along to have pre-natal testing which would determine if the child I was carrying would also have Zellweger Syndrome.  The tissue samples were sent off to Johns Hopkins and we were sent home to wait for the results.  Three long weeks later the phone call came.

Driving home to meet me so we could return the call and hear the results together, David imagined what it would be like to expect a different phone call.  What if we were expecting a call from a doctor telling us that a young couple had given birth to a child with Zellweger Syndrome and they were unable to care for the child?  He imagined how we would respond if they asked us if we would be willing to take the baby.  And that was easy- who better to care for a child with the syndrome than two who had already done so once?  Of course we would.  Somehow, that perspective took away some of the fear.

The same geneticist who came to our room to deliver Hope’s diagnosis was on the line.  “The results are positive,” he said.

“Positive, like good news, or positive like positive for Zellweger?” I asked.

“The results are positive for Zellweger Syndrome,” he clarified.

I think I had prepared more for the bad news, but with a 75% chance of a healthy child, that is what I really expected to hear.

We had told the doctor that we would continue the pregnancy no matter the test results, but he asked if we wanted to reconsider.

Anyone who knew us and knew Hope also knew that as deeply as we hurt, we also felt enriched by having Hope for those brief six months.  We were changed people as the result of being forced to dig deep into our faith to figure out how to walk through such an experience of loss and still see God as good and life worth living.  Hope had shown us how to do that.  Of course we would do it again.

David and I stumbled through that day, figuring out how we would tell our son and our parents and those close to us.  We worked on wording for a card that we printed and sent to our friends and family and business associates that expressed our honest emotions:

“We could have never imagined what a blessing Hope was to our lives, and so now, we humbly anticipate what God has for us in this new life.  It is much different this time, since, with Hope. we didn’t know until she was born that she suffered from the syndrome.  We didn’t know what her life or her death would be like.  This time, we know.  That knowledge brings us a mixture of pain and pleasure as we anticipate the days and months ahead.”

From a human standpoint, one could say that we have incredibly bad luck!  But we don’t look at our lives that way.  We know that God is sovereignly in control of our lives and of this child’s life, and we are amazed that God would entrust us with what seems like an incredible responsibility.

On July 16, 2001, we headed to the hospital with several name possibilities for our son to be born that day. I suppose we felt some pressure. We wanted his name to be as significant and meaningful as Hope had been for our daughter. And after he was safely delivered, one name easily rose to the top of the list-Gabriel. That day, David sent an e-mail to friends and family that explained our choice. He said:

“We chose his name because we believe that he, like the angel Gabriel, is sent from God, and protected by God. We will not be surprised if he has heavenly messages for us to hear, if we will listen. And significantly, whenever Gabriel appeared in the Bible, he reassured his stunned audience: “Don’t be afraid!””

Gabriel seemed stronger than Hope was, and we thought he would be here longer, but he left us the day before he would have been six months old. We spent those months enjoying him and loving him and caring for him, and then he quietly slipped away as David held him. What a precious, sweet surprise he was.  We miss him immensely, but we’re so glad he was here if only for a short time.

Why would God ask us to do it a second time?  I don’t know.  I just know that once again, we were blessed with a beautiful child who helped us to see who God is and how he works more clearly.  He showed us that the value of a life is not measured by its length or what a person can contribute. Gabriel showed us that God has the ability to take the most bitter experiences of life-even death-and redeem them if we will look to him to do so.  He implanted within us more of a longing for heaven.

In the world’s eyes Hope and Gabriel-two children who couldn’t see, couldn’t hear, couldn’t respond- had little to offer, but they taught us deep truths and opened our eyes to God in ways that left us enriched and alive.  Somehow we see God more clearly in days of difficulty-perhaps because we are desperately looking for Him.

We are back to ordinary days with long to-do lists.  But we are changed people.  We are grateful people-grateful for the richness and meaning Hope and Gabriel brought to our lives. Sorrow has only enlarged our capacity for joy and meaning.  We discovered we could do it again, not because we are strong people, but because God was with us and he provided the grace we needed for that journey.  Hope and Gabriel sent us down a pathway of suffering that led us to the very heart of God.

Nancy Guthrie has written her story in the book, Holding On to Hope and has also written a daily devotional for those who are hurting or grieving called The One Year Book of Hope. Her newest book is Hearing Jesus Speak Into Your Sorrow. She and her husband, David, and son, Matt, live in Nashville, Tennessee. Find more information about Nancy at www.nancyguthrie.com.

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