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This is my fault. I didn't pray enough for a healthy baby. That was my thought in the hours after we received our daughter Hope's diagnosis. She was in her second day of life and numerous "small" problems pointed to a larger problem. The geneticist told us Hope had a rare metabolic disorder called Zellweger syndrome. He explained that because she was missing a subcellular particle called peroxisomes, her systems would slowly become toxic and shut down. "Most children with this disorder live less than six months," he said. My first reaction was to conclude this "curse" was the result of my prayerlessness while Hope was in the womb. I had some prayer guides for praying for my forming child, but I didn't use them much. When we learned of her condition, I began to think I was paying the price.That night, after my husband David and I were left alone with the pain of the news, we lay in bed and, out of our fear and despair, cried out to God. I'm not sure of all that we said. Eyes open and looking up, I know we said, "We need you. We need courage. We need wisdom. We trust you." I think we expressed trust more out of a desire to trust than a confession of the reality in our souls.In the days and weeks that followed, we found ourselves praying together often in bed in the dark. We were profoundly aware of our utter dependence upon God. We were powerless to change our situation and desperate to see God work. We also found, as time wore on, that we prayed less often. We felt guilty that so many people were praying for us so diligently when we were so prayerless. Yet it was difficult to know how to pray. How do you pray for a child who is going to die?

The secretary from church called and told me that we were on the church's prayer list and that they were asking people to pray for God to work a miracle and heal Hope. I told her, "That is not how we feel led to pray." We did not ask God for that. Maybe we were afraid to pray that, or to expect it, when the diagnosis seemed so sure and grim.In those early weeks, God seemed to speak to me clearly. I never heard an audible voice. He spoke to me the way he always does—through Scripture. A few weeks after Hope was born, my Bible-study group looked at the story of Hagar, who had run away from Abram and Sarah because of Sarah's harsh treatment. Hagar wanted to escape her difficult situation, but God spoke to her in the desert and told her, "Return and submit."The lecturer asked us the question, "What is God calling you to submit to?" I knew God was calling me to submit to the journey we faced with Hope—not to fight it or cry out asking him to change it, but to submit to his plan and his purposes.Shortly after that, we were looking at the story of the angel who came to Mary and told her she would give birth to a son. How did this "favored" one respond? "I am the Lord's servant. May it be to me as you have said." She submitted, though what God brought to her life, from her perspective, must have looked like a disaster.Again I sensed God calling me to submit to the plan he laid out before us—to walk through it, trusting him in the midst of sorrow and difficulty and disappointment. On Christmas day we took Hope back to the hospital and visited with her doctor and nurses. Our nurse, Ginny, told us about another recent birth at the hospital. The mother was a nurse there, and the other nurses had been amazed by the joy and peace with which she accepted her severely disabled baby. Ginny told us how the couple had planned on someday adopting a special-needs child.What struck me most was her description of how these parents prayed. Early in the pregnancy, instead of praying, "God, give us a healthy baby," they began to pray, "God, give us the child you want us to have." Their submission to God amazed me, and their prayer pierced my heart. Surely that is the kind of prayer our Father desires to hear—not "Give me what I want," but "Give me what you want me to have."It reminded me of the Psalm that says, "Delight yourself in the Lord, and he will give you the desires of your heart" (37:4). I've always found it somewhat humorous the way some people interpret this verse: just get close to God, and he will give you what you want. But I think this verse says when you truly find your delight in the Lord, God molds and shapes the desires of your heart so that you truly want what he wants for you.

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July 10 2000, Vol. 44, No. 8