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One day at a time

Posted by Ralph Ranalli July 29, 2007 11:28 AM

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Carole Kelley is the primary caregiver for her daughters Shannon, 21, in baseball cap, who has Down syndrome and Crohn’s disease, and Caitlin, 18, with backpack, who is developmentally disabled. (Globe staff photo by Matt Lee)

NEWTON

Carole Kelley intimately knows the geography of her children's scars; not just the marks left from a bout of chicken pox or a tumble from a bike, but those where doctors once inserted Caitlin's feeding tube and where Shannon had her colon surgery. She can point them out like countries on a map.

Many families find themselves dealing with a tragedy. The Kelleys of West Newton have suffered a stream of life-altering calamities. Carole's husband, Mark, 51, has end-stage kidney disease. His doctors say people live with the condition for decades, surviving through dialysis, but already he has endured the partial amputation of his left foot and the loss of a toe on the right, staff writer Stephanie Siek reports.

The two youngest of their four children, 21-year-old Shannon and 18-year-old Caitlin, have special needs -- Shannon has Down syndrome and Crohn's disease, and Caitlin is developmentally disabled. The family also includes two other children, 23-year-old Sarah and 22-year-old Ryan, who are both living at home.

As the primary caregiver, Carole, 55, has to choreograph an intricate dance of differing dietary needs, medical appointments, and medications, on top of the conventional details of family life -- her job as a cafeteria worker at Newton North High School, Sarah's graduation from Pine Manor College, Caitlin's prom, paying the household bills, making sure the family's two dogs have food and belly rubs.

For balancing all of this, people have called Carole an angel, a saint, and a martyr. But that's too simple. Angels don't get angry or depressed, or cry with frustration. They probably have tidier houses and never argue.

Read more about the difficult yet rich life of Carole Kelley and her family in the online edition of today's Globe West.

You can also check out a gallery of Globe staff photographer Matt Lee's photos of the Kelleys.

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