Katie Lindenfelser describes Crescent Cove as a circle of love, a place of joy. They're not words one might expect of a hospice and respite center for children, but founder and executive director Lindenfelser said Crescent Cove strives to find balance in its work.
Crescent Cove, located on Twin Lakes in Brooklyn Center, welcomed its first family in 2018, but it began as a nonprofit more than 10 years ago. Lindenfelser, a music and massage therapist, was working in a children's hospice in Australia when her husband, Matt Christensen, suggested that she get involved in a center in the United States.
But at the time of Crescent Cove's opening, only two other children's hospices existed in the U.S., neither in Minnesota. More are now in development, but a lack of research and money makes growth difficult, Lindenfelser said.
"In our culture, there's a focus on cure, which is fantastic," Lindenfelser said. "But when that's not possible, it's like families are left almost in a lurch, [unsure] of what to do next. It's a scary thing, even for providers to face, that a child is going to die. It's not the end result that anybody wants to face."
Christensen decided he was going to help his wife fill this need. The couple, along with some friends, began regular meetings around their kitchen table to plan, creating lists and spreadsheets of potential contacts.
They formed focus groups to decide on the best language to use for the organization's mission. Lindenfelser's and Christensen's 2009 wedding even served as the organization's first fundraiser.
"Katie had a strong focus on continuing to keep this community-based and not directly aligned to just one hospital in the community, but making sure that we support all of the hospitals in the community," said Lindenfelser's friend and founding board member, Nadine Gregerson.
Initially, the organization provided resources to families, such as volunteer help, massages and counseling.
Tiffany Goodchild of Hugo, whose 4-year-old son, Karter, was on hospice at home following a significant brain injury at birth, attended a retreat sponsored by Crescent Cove at Faith's Lodge in Danbury, Wis., for parents of children who have died or who have medically complex conditions.
There, Goodchild met another mother who has become a good friend and support system, fully capable of understanding her experiences.
Lindenfelser is heartened by these connections. "It's such a powerful witness to human compassion that they understand where the other person is at, and they're there for them in the way that we hope, as an organization, we're there, as well," Lindenfelser said.
To continue their work toward a physical home, Lindenfelser and her supporters backed language changes in existing licensure requirements to include children and young adults, which was passed by the Minnesota Legislature in 2016. Lindenfelser also visited children's hospices in the U.K. and Canada to inform her work. After extensive community building and fundraising, the organization purchased what was once an adult hospice and transformed it into Crescent Cove.
Some families may prefer end-of-life care for their child to be in a hospice center to avoid the medicalized setting of a hospital. A place like Crescent Cove understands that children's needs can differ from those in adult hospice centers.
"But they also don't necessarily want to have the association of that end of life to occur in their home," said Crescent Cove medical director Kimara Gustafson.
In addition to hospice care, the center offers 15 days of annual respite care, allowing families time for rest and children an opportunity to enjoy an independent experience.
While still receiving their daily care from a staff of nurses, children at Crescent Cove can enjoy visits from professional sports players, like the Twins, Wild and Vikings, as well as art activities through Ziggy's Art Bus, and massage therapy. Parents can also participate in support groups and counseling. Parents and siblings are invited to stay overnight with the child receiving care, something that's not always possible in hospitals.
Goodchild said her son has gone to Crescent Cove for respite three or four times a year for many years. "And every time we go, he gets introduced to new activities. They do music therapy, they do art, they go for bike rides, they pontoon ride, just all these things that he wouldn't get to experience at home," she said.
Having a place like Crescent Cove can be a game-changer, Goodchild said.
Shannon Walsh, of Hugo, also used the organization's respite care for her son, Toby, who was born with a genetic disorder.
"So it's just kind of walking hand in hand with joy and sorrow, which I feel like Crescent Cove does a good job of," she said.
The pandemic has limited some activities and led to extra precautions, including limits on the number of children staying there, and the number of volunteers serving them. Some activities are done over video call. At Christmastime, they organized a drive-by get-together with Santa and gift cards.
Despite the changes, Crescent Cove still enrolled 56 new families in 2020.
Crescent Cove shares its knowledge with others, in part through a yearly pediatric palliative care symposium, and pays families' out-of-pocket costs with the help of donors. The organization hopes to increase its nights of respite from 609 last year to 1,000 in 2021.
Walsh and her husband, Jon, know better than most parents how urgent the need is. Their older son, Landon, died in 2013 of the same abnormality that Toby has. They would have embraced hospice care at Crescent Cove had it been an option.
"They're like family to us," said Jon of Crescent Cove. "And they provide us with a rally point for Toby. So it's not always thinking about death. We can celebrate all these little moments as a family."
Imani Cruzen is a Minneapolis freelance writer.