As she cared for her son with disabilities, woman reached out to countless others
05/05/2014 8:38 AM
05/05/2014 8:39 AM
When Betty Moore’s youngest child was born, she was told quite bluntly that it would be best to send away the baby, a son she’d named Jimmy.
Later she was told a lack of oxygen while in utero was to blame for his severe disabilities. From the start doctors said he probably wouldn’t live long. He wouldn’t speak, would be hard to feed and would not walk. Institutionalize him and move on, they said – you can’t take care of him.
“The one word she could not stand to hear, the one word she hated the most, was the word ‘can’t’,” said her son, Durham Moore III.
After years of doing her best with Jimmy at home, and a few more years in institutions where family members say he was often neglected, Betty Moore and her husband, C. Durham Moore Jr., helped found the Tammy Lynn Center for Developmental Disabilities in Cary.
Betty Moore lived to see the foundation celebrate its 45th anniversary this year. She died in April at age 90 – seven years after Jimmy died at age 48.
The center has grown to provide support to 400 families throughout the state, with an annual operating budget of $8.5 million, said Holly Richard, the center’s president and CEO since 2012.
“We are a birth-to-heaven organization,” she said, providing care for the duration of a client’s life.
“Betty, she was really the force behind it,” recalled Ruth Pierce Johnson, a co-founder who was the mother of Tammy Lynn, a daughter who died at age 12. The Moores, the Pierces and one other couple created the Tammy Lynn Memorial Foundation in 1969 after they realized that no one else was going to advocate for their children with disabilities.
Moore brought Jimmy home and raised him along with his two older siblings as long as she could.
“In the early years I don’t think either one of them slept much at all, because Jimmy didn’t sleep,” said her daughter, Terry Moore-Painter. “But she never let on. She was never anything but positive and strong and never let us know how hard it was for her.”
When Jimmy was 6 he spent one year at a facility in Raleigh, and though it went well, he soon aged out. Next he went to the O’Berry Center in Goldsboro, where for more than a month the family was not allowed to visit the 7-year-old.
Once they were allowed to visit again, the Moores spent every Sunday at O’Berry, now the O’Berry Neuro-Medical Center, in Goldsboro. As family members and friends recall, the Moores watched the miracles they worked so hard to make happen at home rapidly dissipate.
They remember seeing the cockroaches in his diapers – Jimmy was only ever dressed in a diaper and T-shirt. Moore brought the boiled custard she made by the quart, her homegrown remedy for a child prone to malnourishment, but he continued to lose weight.
Once, when he was ill and no one notified the family, family members said, they found him strapped to a bed in the infirmary, flies crawling on his face. They noticed that his legs became increasingly deformed because the staff was unable to perform the physical therapy Moore had done at home, even though he underwent surgery to improve his chance of walking.
But mainly, the family said, he was treated as if he were something society need not see. It was unacceptable to them, yet his handicaps exceeded their resources at home.
The Moores turned to the Association for Retarded Citizens of Wake County, and through that group they joined forces with the two other founding families, the Pierces and Tuckers.
Soon the Moores’ kitchen became a hub of sorts, her son recalled.
“My parents lived it. It was part of lunch conservation. It was part of dinner conversation. The phone started ringing off the hook,” he said.
Moore became the public voice for their initiative. She learned whom in the state legislature to befriend, whom to avoid and whom to ask for money. The center’s funds began with a pig-pickin’ where plates of barbecue sold for $1.50.
The Tammy Lynn Center began formally providing services in 1972, first as a day care operating out of the basement in Greenwood Forest Baptist Church in Cary. Soon it moved into the former Catholic Nazareth Orphanage in Raleigh, where residential and respite care services began.
Programs like this were rare in the country at the time, and there was nothing like it in the state, said Mary Freeman, former president and CEO.
“The center’s mission was created for those with the greatest need, and the least access to services,” Freeman said. “The work that they did truly changed our community and brought personal freedoms to so many people.”
Jimmy moved into the Tammy Lynn Center in the 1970s and remained there until he died in 2007.
Betty Moore not only built a home for him, she communicated for him, helped him learn how to walk, and refused to allow shame into their family dynamic.
“My mother and my brother had this bond that went beyond description,” Durham Moore said. “My mother was really capable of zeroing in on something that might be wrong with him – because he couldn’t speak.”
For information on the Tammy Lynn Center visit http://www.tammylynncenter.org/
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