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?

Submitting to Disappointment

The secretary from church called and told me that we were ...

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July 10, 2000

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