By Tanya Connor
Everything in my whole life that I am most proud of is because of Michael,” Carolyn Brennan, of St. Mary Parish in Shrewsbury, says of her oldest child, named for an archangel. The only thing she is prouder of is being smart enough to marry her husband, Michael, she adds.
Her vocation of motherhood led her to careers which themselves are vocations.
When Michael was born in 1985, she and her husband were told he would live only 18 months, “be a lump,” and never know them, Mrs. Brennan said. Although he was medically fragile all his life, he far exceeded doctors’ expectations.
Michael ended up being a quadriplegic, lived with a tracheostomy, took 78 medications and needed his lungs suctioned every five minutes.
But, his mother said, “He thought his life was wonderful.… He was very pro-life.… He had valued roles.”
He had in-depth conversations, with the aid of a communication device, and he even had friends over for his 21st birthday – without her help.
Michael died on Palm Sunday 2010. She continues helping other disabled people to have valued roles like he did.
She became a registered nurse in 1988 to better care for her son, she said. Because she was a nurse and a parent, she was asked to help start a home health agency for the disabled. She did so with her friend Patricia Luce, whose son, Scotty, was “very medically complex.” They co-founded Family Lives in 1999 with people from Shriver Clinical Services in Wakefield.
The women had gone to a course with Shriver for “social role valorization” training in 1995. The idea was to learn how to help people with cognitive disabilities to be valued for the roles they play, like other people are, and to help them play more roles, Mrs. Brennan said.
Wolf Wolfensberger, now deceased, coined the concept of “social role valorization,” a refinement of the principle of “normalization.” Mrs. Brennan said she had gotten to meet him.
Professor Wolfensberger’s parents had sent him away from Nazi Germany as a youth, Mrs. Brennan said. Returning after World War II, he was appalled to find no middle-aged or older people with disabilities. They had been killed in gas chambers.
They’d been removed from their families, which makes people more vulnerable, said Matthew Brennan, her son and managing director of Family Lives.
“Scotty believed that people who lived in institutions were homeless,” Mrs. Brennan said. “He got it. He got that living in an institution doesn’t allow you to have all the roles.”
Scotty and Michael were valued in their families, but not always in the greater community, Mrs. Brennan said.
Their families were tied up with caring for them and fighting with insurance and equipment companies to get them what they needed, she said. Just because a doctor ordered something such as a custom wheelchair didn’t mean insurance would pay for it, or pay enough to satisfy companies that could supply it.
Scotty’s death at age 12 was harder because his family was engaged in such advocacy for him at times when they should have been free to take care of him, she said.
Conrad O’Donnell, who sponsored the Shriver course and became part of their families, promised Mrs. Luce he’d try to see that this kind of misfortune never happened to another child, Mrs. Brennan said.
And so was born Family Lives, certified in 1999 to serve the severely disabled, and funded by MassHealth. It was a division of Shriver Clinical Services from 1999 to 2003, then became Shriver Nursing Services Inc. doing business as Family Lives. The agency operates in a former church building at 36 West Main St. in Westborough.
Family Lives recruits, hires, trains and places nurses and therapists in the homes of disabled individuals who need continuous nursing services (defined as more than two hours per day up to 24 hours per day).
“We chose ‘Family Lives’ because you can say it two ways,” Mrs. Brennan said. “We wanted people to know that Family Lives’ purpose was for families to live.”
They started with six youth in Central Massachusetts, including Michael, she said. Now they serve 105 families throughout Massachusetts.
“It’s a secular organization that has very Catholic values,” said Mrs. Brennan, who is CEO of Family Lives.
Matthew Brennan said they interview potential employees and train them differently than other agencies do because they want the position to be more than a job.
Mrs. Brennan said they want employees to understand that patients belong in the community and have much to offer it.
“We want them to be … the kind of nurse they always wanted to be,” she said. That’s why the nurse who took a $7-per-hour pay cut to work there thanked her for the job.
“You will make a difference in somebody’s life working for us,” Mrs. Brennan said. “And I think when you work for this population you become a better person. They bring out the best in you.”
Family Lives has 228 nurses and 10 therapists, and need more, she said.
“There is no better job,” she maintained. “You get to work with your heroes every day. (Parents) take care of their children with an amazing amount of grace. They’re told almost every day that their child has something wrong, and yet they have a smile on their face.”
Family Lives tries to help parents see possibilities for their children, and pays for nurses to take courses to help them realize possibilities, Mrs. Brennan said. She herself has taken patients scuba diving in a pool with the organization Diveheart.
There a patient became the star of the day by helping a fellow patient, she said. None of the adults without disabilities could get a frightened Bethany Dawes to take the plunge. Her friend Amandajean Indelicato, herself disabled, went to Bethany and pointed her thumb down. Down went Bethany! And she came up proud of herself.
“We don’t want our kids to be looked at as their diagnosis,” Mrs. Brennan said. “We need to see the possibilities … because we owe it to them. They have an inherent dignity. I would be a lesser person for not having been with them.”