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A Mother's Story : For Ruth Pauff, Caring for Her Critically Ill Son Is a Labor of Love

May 08, 1988|NIKKI FINKE | Times Staff Writer

"Happy birthday to you,

"Happy birthday to you,

"Happy birthday, dear Stan,

"Happy birthday to you."

Every year she sings these words to her son, and every year they take on more meaning for her. Ruth Pauff doesn't know how many more birthdays her son has left. So last week she was determined to make his 29th celebration the happiest ever.

For starters, she baked his favorite all-grain breakfast muffins. Then she and her husband buckled on their son's leg braces, hoisted him from his bed, strapped him into his wheelchair and pushed him to the kitchen table. From there, he could watch his mother open the presents she had painstakingly picked out for him and register his approval with an ear-to-ear smile.

There were three VCR tapes she knew her son would like--"The Right Stuff," "Indiana Jones and the Temple of Doom," and a compilation of the Three Stooges. There was a scrapbook for the baseball paraphernalia he faithfully saves. And, just for fun, there were bags of peanuts-in-the-shell, which she bought with the hope that her son would eat them and feel like he was seeing a baseball game at Dodger Stadium instead of alone in his bedroom watching TV.

All His Favorites

Then she cooked his favorite dinner: Swedish meatballs, mashed potatoes and a lemon meringue pie, which she loaded with birthday candles. He was able to blow them all out.

All in all, it was a good day for Stan Pauff. And, because of that, it was an even better day for his mother. "A day for what I call 'the warm fuzzies,' " she says about the feeling.

Unfortunately, such good days are rare.

The 55-year-old Glendale housewife is at the stage in life when most women say goodby to their children and hello to that phenomenon known as the empty-nest syndrome, when they stop worrying about their children's daily needs and reawaken to their own.

In this way, one by one, her circle of friends has retired from motherhood. Everyone but her. "I didn't plan on having as big a mother job as I've had," she admits.

For Ruth Pauff is one of the countless mothers nationwide who in modest homes and unassuming neighborhoods make their mark in the world by quietly and unquestioningly devoting themselves to the care of a dependent family member.

Self-Sacrificing Love

They are not celebrities or career women or charity doyennes. They haven't formed lobby organizations or support groups. They rarely, if ever, bask in the spotlight of public attention. They are women whose self-sacrificing love often escapes the notice of all but their family and friends, even on the one day that is theirs--Mother's Day.

Women like Ruth Pauff, the mother of two. She saw her youngest child, Cathy, a speech pathologist, marry and move away to Stockton. But Stan is still at home because of an array of medical ailments, including cerebral palsy, brain seizures and Friedreich's ataxia, an extraordinarily rare and incurable degenerative disorder that steadily robs him of muscle coordination. And she is his full-time attendant.

"From the very beginning, she has learned to live with the daily strain of knowing her son is going to get progressively worse, and not knowing how long this will last and to what extent," says social worker Lupe Alle-Corliss, the Pauffs' long-time therapist. "But no matter what struggles they've had as a family--and they've had so many--she has always been determined to try to make the best of things. That's why my title for her is 'supermom.' "

If ever anyone was born to the role, it has to be this former elementary school teacher with her gentle manner and strong will who has given up her career, her privacy and her independence to keep her only son at home. Her last real vacation with her husband was three years ago. They share an evening out only three times a month.

She's Home All the Time

"Any man who has a job can go away from the house and just put the situation out of his mind," says John Pauff, a 56-year-old auto parts salesman. "But the hard thing on Ruthie is that she's home all the time. You wonder how she can keep on going. But she does."

Most of all, she has traded away her own future so that her son might have one, as bright and hopeful as she can make it, however short. "But don't call me a saint because I'm not," she insists. " Absolutely not. This is just so ordinary.

"This is what any mother would do."

It is lunchtime. Stan Pauff, helped by his part-time home attendant Isabell Jacobo, is eating his meal while his mother looks on. "His lunch today," she says, "is a turkey-and-cheese sandwich on whole-wheat bread, a glass of milk and, for dessert, vanilla yogurt."

Stan interrupts her and says something unintelligible.

" Lemon yogurt, excuse me," his mother says with a laugh.

Can he manage the sandwich? He nods his head proudly, clutching one half with an awkward, vice-like grip.

"Sometimes the filling squeezes out," his mother notes. Stan smiles.

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