On a warm spring evening, Sonia Norris D’06 finishes classes at the divinity school, picks up a large pizza, and drives to Toni and James “Tinker” Turner’s ranch-style home in northern Durham.
The couple greets Norris at the door, puts the pizza in the oven, and invites her back to the bedroom of their 20-year-old daughter Elizabeth.
“Sonia always speaks to Elizabeth when she comes,” says Toni, her voice filled with gratitude. “All the support team people do.”
That support team reflects the efforts of Norris, who has brought together the Turners’ faith community with Project Compassion, a national leader in the field of volunteer care teams.
“Sonia has made such a difference in our lives,” says Toni. “She is a blessing.”
Elizabeth’s bedroom looks just as it did when she was in first grade, which was the last time she could really see it: pastel pink walls topped by a dainty border of wallpaper, girlish framed prints, soft stuffed animals on every surface. There’s a collection of porcelain dolls safe on a shelf.
“She started collecting those when she could feel the dolls, but could not see any longer,” explains Toni.
Norris takes Elizabeth’s hand and softly says hello.
“Elizabeth can’t say a lot,” explains Toni, “but she can say ‘Hey.’”
The Turners adopted Elizabeth, their only child, as an infant. She was healthy until first grade, when she began having trouble seeing the blackboard. A referral from the family eye doctor led them to Duke Hospital and, ultimately, the diagnosis of Batten disease. A rare fatal inherited disorder of the nervous system, it typically begins with vision loss and epileptic seizures. The disease, which is painless, gradually leads to progressive cognitive and physical loss with death resulting in the late teens to early 30s.
Norris, who graduated in May, organized a support care team for the Turners last summer at Union Grove United Methodist Church in Hillsborough, where Tinker’s family has worshipped for generations.
The support team has provided a meal every other day for the past year, giving Toni and Tinker more time to spend with Elizabeth. “They really needed help,” says Norris. “They’ve been providing her care 24/7 for a long time.”
With respite care from a volunteer nurse on the care team, the Turners recently went out alone—to the mall and to dinner—for the first time in 15 years.
“We sat down and I looked at Tinker and said, ‘I don’t know what to talk about,’” says Toni. “You know, you just forget what it’s like to go out alone.”
Norris says her journey to Elizabeth Turner’s bedside has been “a leap of faith every step of the way.” When she learned her 2005 summer field education assignment was to revitalize Union Grove’s health ministry, she says “I had no idea where to start.”
She called on Susan Dunlap, an adjunct assistant professor with whom she had done an independent study on pastoral care of the sick. Over coffee, Dunlap told her about Project Compassion, a five-year-old non-profit best known for advance care planning and support care teams. Unlike hospice, this free community service provides volunteer support teams for those who need temporary care after surgery or accidents.
The genius of their care team model, says Dunlap, is that it draws on the patients’ own networks and asks: Who do you want on your team? Volunteers may include any combination of church members, neighbors, or other friends, as well as newcomers.
“I’m totally sold on the concept of care teams for churches,” says Dunlap, who learned about the organization while doing research for Caring Cultures, a book on how three Durham congregations—one mainline Protestant, one Hispanic and one Pentecostal Holiness—care for one another. A breast cancer survivor featured in the book was so moved by her church care team that she volunteers to visit Dunlap’s classes and share that experience.
“Care teams put patients in touch with their faith,” says Dunlap. “And they become a powerful experience of God for the team members.”
Founded in 2001 by community volunteer Mary Sullivan, Project Compassion helped Norris organize a care team meeting for the Turners at Union Grove. At the first meeting, 20 volunteers showed up.
“Project Compassion’s approach to care takes the burden off the individual,” says Norris. “It’s a shared responsibility, rather than any one person being overwhelmed. Some people love to cook, some just want to make the deliveries. The model helps build relationships among the team members and it’s not overwhelming at all.”
A support team leader makes certain that the monthly meetings last no longer than 59 minutes. “We never go over,” says Norris, who currently leads three teams: In addition to the Turners’, she organized a team for a divinity couple expecting their first baby, and another for elderly residents of a local nursing facility.
Norris passes around a calendar so the entire month’s support can be scheduled, and time is built-in for concerns and joys. Experts, such as a physician who treats Batten disease, are invited to share information and answer questions.
Norris remembers “always wanting to make a difference” as she was growing up in Huntsville, Ala. But the path she imagined for herself pointed to the courtroom, not the bedside.
She majored in English and political science at the University of Alabama-Huntsville and planned to become an environmental or children’s legal defense attorney. But several years after college, she found herself working as a legal assistant doing international treaty analysis for the U.S. Army.
“I realized that I was in an environment where I didn’t feel like I was making a difference,” she says.
She became a hospice volunteer, working with families in a bereavement program. And then her grandmother died. “That was a huge loss,” says Norris. “It re-energized my search for something with meaning and purpose. End-of-life care is where it all came together for me.”
Friends and mentors suggested she look at Duke Divinity School, where a new institute dedicated to end-of-life issues was based. “I jumped on the Web and found the Duke Institute on Care at the End of Life (ICEOL),” says Norris. “I recognized right away that it was something I wanted to be a part of.”
Once at Duke, Norris tailored her master of divinity degree around end-of-life care. In January 2005, just after ICEOL Deputy Director Jeanne Twohig arrived, Norris was there to welcome her.
“This student came knocking on my door and said, ‘I see you haven’t even unpacked. I’ll come back.’ And she did!” says Twohig, with a grin. “Sonia just had a burning passion to do this work.”
The Union Grove UMC/Project Compassion collaboration Norris led was so successful that Twohig and her colleagues at ICEOL took note. With funds from the Merritt and Susan Jones Endowment, earmarked specifically for educational opportunities for pastors and divinity students, Norris has served a 15-hour-a-week internship at Project Compassion.
For James Brooks, director of Project Compassion, Norris’s presence has meant “we’ve been able to do more research, provide more support, and become better equipped to engage with the community. We are coordinating at a more intentional level, and we’ve been able to offer Sonia a chance to grow in this field.”
Brooks describes Norris as a unique combination of passionate advocate and gifted bridge-builder.
“We are bringing together faith communities of different denominations with secular groups in a meaningful way around issues we all share,” says Brooks. “Not everyone has the calling to work with such diverse groups—to step out and go beyond their safety zone—and find what brings us all together. Sonia has a different kind of gift.”
Twohig says Norris is different from when they first met. Before, she had desire, but no idea how to fulfill it. Now her passion and her ability have come together.
“With this model [for care teams] and Sonia’s work, you see how transformational this ministry can be,” says Twohig. “When everybody is bringing what they can to the table, magic can happen.”
Elizabeth’s health has declined in the past year. When her vision failed in elementary school, she learned Braille, and then used books on tape to continue her education. For many years, she accompanied her parents in a wheelchair and enjoyed Girl Scouting. She attended a self-contained class at Riverside High School in Durham and had hoped to graduate in 2005, but an infection put her in the hospital instead.
Last September, doctors inserted a feeding tube. Her mother worries that she needs to gain weight, and is hopeful she will. “Elizabeth is a fighter,” says Toni. But the Turners know there is no cure for Batten disease.
“Elizabeth’s dad said to me ‘We know there’s no happy ending,’” says Norris. “The Turners have become my friends. We sit and just talk, and what I’ve learned is that when you give, that capacity expands—to do more and to do it better. There’s a sensing of God’s presence.
“I like bringing people together for a common need. As Maya Angelou says, ‘We have more similarities than differences.’ From a theological perspective, we are all created in the image of God. And it’s amazing to see people put aside their differences and stretch—and get stretched—for a common need.”
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