November 17, 2014 12:00 PM

Timothy Shriver remembers her as gentle Aunt Rosemary: a familiar figure who visited his family’s Maryland home during his youth. She could answer simple questions but “didn’t have the capacity to say, ‘How was your day?’ ” recalls Shriver, 55, the son of Rosemary’s sister Eunice Kennedy Shriver. The third of Joseph P. Kennedy and Rose’s nine children, Rosemary was born mentally disabled in 1918 and, after undergoing a botched lobotomy at age 23, was hidden from public view and cared for by nuns in a Wisconsin Catholic institution until her death in 2005 at age 86. “She was our family secret,” says Shriver, chairman of Special Olympics, which his mother founded in 1968 for people with intellectual disabilities. (For more info, visit SpecialOlympics.org.) When he began Fully Alive (excerpted here), his new book about the joy and fulfillment he finds working with intellectually disabled athletes, he realized he needed to include a chapter about Rosemary. “I felt, why are we hiding this story?” he tells PEOPLE’s Liz McNeil. “It’s a human story, a heroic story.” It’s Rosemary, he believes, who was the true inspiration for his famous family’s love of service. “Her role was so powerful,” he says. “She deserves our gratitude.”

I remember my mother often explaining Rosemary’s challenges as resulting from a troubled delivery. “Rosemary lost oxygen, and we think that’s what caused her difficulties.” Whatever the cause, it became apparent soon after her birth that, in the jargon of the day, Rosemary was “mentally retarded.”

Her parents, like millions of others whose children are different, struggled to find support. Rosemary attended the same schools as her siblings until she was 11. By then she had fallen so far behind that her parents sent her away to an experimental boarding school designed for the “feeble-minded.” She came home once or twice a year and struggled with the separation. “Dear Mother, I miss you very much,” she wrote in block letters on Nov. 17, 1930. “Did you ask Miss Devereux if I could go home on Thanksgiving? Please do.”

Over the next 11 years, she would attend multiple schools, with brief intervals of living at home. Still, her siblings doted on her.

Jean and Teddy included her in tennis. Joe and Jack brought her to the dances. Eunice and Pat and Bobby sailed with her and played touch football.

Her parents pretended she was no different from their other children.

In fact, they tried to hide Rosemary’s condition from their friends, and even from Rosemary herself. There would have been people who might have whispered about “bad blood” in the family. They also believed Rosemary would be happier if kept unaware of how different she was. But the code of silence led Rosemary to become confused and frustrated when she could not keep up.

In 1938 Joseph Kennedy became ambassador to Great Britain.

His family—Rosemary included—set sail for London. There, to everyone’s surprise and relief, Rosemary thrived. She was allowed to make her society debut, was presented before the King and Queen and attended fashionable parties. She felt dazzling and adored instead of slow and lonely. She loved it.

Still, she wrestled with dark moods and impulse control, and her parents became increasingly anxious about her future.

She was often angry, sometimes violent. “She was unpredictable,” wrote my grandmother. “Some of [her] upsets became tantrums, during which she broke things or hit out at people. Since she was quite strong, her blows were hard.” At the time, yet another new possibility for “fixing” Rosemary was gaining adherents: the lobotomy.

Rosemary had the procedure, then considered a “miracle cure,” in 1941.

My grandfather must have emphasized Rosemary’s rages and rebellious wanderings when he consulted with [her doctor]. To the end of her life, my grandmother would maintain that this assessment was correct: “A neurological disturbance or disease of some sort seemingly had overtaken her, and it was becoming progressively worse.” My grandfather scheduled a lobotomy for Rosemary—without telling my grandmother or any of his other children.

The procedure itself was chilling. The surgeons inserted an instrument shaped like a butter knife into the skull. They then swung the knife up and down, severing the frontal lobe’s connection to the rest of the brain.

Patients were kept mostly conscious during the operation, so the surgeons could gauge how deeply to cut based on the patient’s ability to answer questions. When a patient’s responses became disoriented and incoherent, they normally stopped cutting. The outcome, in Rosemary’s case, was devastating.

After a few weeks, it became apparent that she had been robbed of her speech and of significant cognitive capacity. She became severely limited in her ability to process and recall information. Her mobility was damaged. She lost her independence for the rest of her life.

Kennedy placed his daughter in a Wisconsin Catholic institution.

Stoic but shattered by the results of his decision, he would never visit her there or—as far as I can tell—see her for the rest of his life. For years, her siblings did not even know what had happened to her. Members of her family were in such a flurry of activity and grieving other losses at the time that they apparently never questioned one sister’s absence until much later. The code of secrecy kicked in and Rosemary disappeared.

In later years Rosemary visited the Shrivers’ home.

She spoke only a few words—”baby,” “Eunice,” “something to eat,” “Teddy.” She smiled occasionally, walked tentatively and could catch a soft foam ball.

She expressed opinions on her meals—”No diet food!”—and whether she might like to travel. But whether she had any inkling of how much her life had changed from what it might have been had a series of fateful decisions not been made in the 1940s, we will never know.

Tim’s mother, Eunice, who died in 2009, was profoundly affected by her sister.

My mother spoke rarely but with a controlled ferocity about her childhood with Rosemary. “Sometimes we would be at dinner and Dad would ask us each about the events of the day and I would see Rosie sitting there knowing she wouldn’t be able to answer like the rest of us. And …” Her voice would trail off. “Rosie couldn’t keep up, didn’t fit in.”

Today Shriver sees Rosemary’s legacy in his family’s focus on the neglected.

At some level they must have realized that in their sister Rosemary, they had received something far greater than they had ever been asked to give: a person whose love they didn’t have to earn. With Rosemary, they needed only to give love in order to receive it back.

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