Passing love on: Families cope with continuing care

They always encouraged Julie's interests and talents, something that matters in spite of disability. Huber said as children age, it's crucial to nurture their spirits and help them grow up as much as possible, to take risks that are appropriate, to live full lives. She likes a book, "Reflections of a Different Journey," a series of interviews with adults with disabilities. The authors asked what the subjects wish their parents had known. "Time after time, they said that 'when my parent encouraged me to be my best, to follow my dream, even though it was hard for both of us, those are the things I'm most grateful for,'" Huber said.

It comes down, she said, to accepting some risk. Allowing a baby with brittle bones to roll over is both risky and emotionally hard. But it's an important milestone. The challenges just get bigger. "What do you do when a child does not want an aide in school any more, when the child is ready to drive. ... Every stage requires assessing risk," she said.

The Kvams taught Julie to swim and bowl. She's pedaled "probably 40,000 miles." He takes her with him to the store, where she lights up and strangers smile at her infectious demeanor. "She's a happy girl," he said, who likes to hide his stuff and giggles and talks to herself. Her "pacifier" is a pair of sticks from pompoms now long gone. They are always nearby, a soother.

Such details are part of care's transition. Finkelstein said families sometimes make know-me books that outline not only medications and mannerisms, but words that will calm when the child is upset or what television shows or treats bring pleasure. It's knowledge only a caregiver can share. And it, like the person being cared for, can be passed on with love.

EMAIL: lois@desnews.com, Twitter: Loisco