David and Nancy both carry a recessive gene for a disorder called Zellweger Syndrome, a disease for which there is no cure. Against 1 in 100,000 odds, they had a child who was born with the syndrome. They named her Hope, who struggled with life for 199 days. (After learning she had the disease, David got a vasectomy.)
Since they knew she wouldn't live long, they celebrated her birthday monthly with birthday parties. It was said she lacked the brain capacity to suffer, but Nancy is not so sure--some nights her daughter whimpered for hours. One night in the seventh month, David went to check on her. Her body was really cool. She was gone. Nancy changed her daughter's diaper one last time.
Now, in spite of his vasectomy, they are expecting another child. He shared the news with their church. After recounting Hope's brief history, he announced, "we're now expecting a child, a little boy." His listeners oohed, ahhed and applauded. "Thank you," David said. "And this little boy will be born with the same syndrome Hope had." Quite audible on the videotape of the event is the sound of several hundred people gasping. Their new child, expected July 16, will almost certainly be dead within a year.
Some of their fellow church members have cast a positive light on their ordeal.
"I think David and Nancy have been entrusted with something [God] couldn't entrust to anybody else," says one. "I think God is intrigued with your faithfulness," he tells David.
"With Hope, the rubber met the road," another said. "At a time like this, you either believe or not." He says the group finally concluded that "we will go down with the ship, believing in our hearts that God is in control."
Some thought this recommitment may have been part of God's plan. At Hope's memorial, Bob, a group member who has since died of heart failure, said, "The Bible says, 'A little child shall lead them.' Make no mistake about it; this dear, precious child did lead us."
But that rationale was more satisfying before the news of this new pregnancy. "Why twice?" asks Bob's widow. "What can God be thinking? Why not give somebody else this experience and let them do some growing?" Nancy says, "I don't think God is obligated to relate His reasons to me."
David relates that recently a neighbor said to him, "Forgive me. I'm not as holy as you are. This kind of thing makes me want to look up and say, 'God? What the f*** are You doing?'"
One Sunday-group participant, remarks of God that "if You took my son, I wouldn't doubt You were alive; I just wouldn't talk with You anymore."
Nancy recalls that after Hope died, she was reading the story of the leper who says to Jesus, "Lord, if You are willing, make me clean." Jesus cured him, replying, "I am willing."
"When I looked at that," says Nancy, her eyes welling up, "I thought He was saying to me, 'I was not willing [to spare Hope].'"
Yet, Nancy believes "God's thoughts are perfect." She has even begun to wonder whether such prayers aren't a bit lazy, secular America's tendency to seek comfort rather than moral challenge. Nancy was surprised when several Christian friends suggested that no one would judge her if she had an abortion, an option the couple never considered.
Says David: "Without a couple of bedrock assumptions, none of this makes sense to anybody."
___________________________________________________________
From When God Hides His Face by David Van Biema
in the July 18 issue of Time Magazine