"Then I told her I thought she would be a good dietitian, fashion merchandiser or writer. The whole conversation took a half-hour or so, most of which was silence waiting for her to answer a question or make a comment."

Scott calls those days Amy's "bump on a log" days. When he first moved back from Phoenix, he'd go to visit and find her sitting on the couch, expressionless, flipping the remote control. He'd speak to her and she'd ignore him. So he'd sneak behind her, put his hands on her shoulders and bounce her up and down, chanting, "Bump on a log," because that's what she was.

He could always, back then, coax a smile from his little sister. Now he never sees her smile.

In March 1997, Lael made a decision. She was working full time to pay bills but had to leave frequently to deal with John's crises at home. And to cap it all, she had a broken ankle. She was relying on neighbors for help she didn't think they should be asked to give. And she was so tired she could hardly stand it.

She decided John's disease had moved beyond her capability.

That's when John entered a nursing home.

· · · · ·

Someone meeting John for the first time today would note first that he's handsome and still looks far too young for his 56 years. Next, they'd note that John doesn't quite focus. He tends to ask what day it is over and over. And he becomes fully animated and engaged only when the conversation turns to children or food — his favorite thing, since his disease burns up to 6,000 calories a day and leaves him ravenous. He loves both.

At a restaurant, he asks several times if he can have pie but can't remember which kind is his favorite. Lael gently offers him advice: "You want pumpkin? You always love that."

A friend's 2-year-old is sitting in a high chair at the end of the table, coloring. He smiles at her, pats her hand and says, "You're a little honey, aren't you?" Then he retreats into his own world again, while the adults talk around him.