Children's hospice will offer kids and families peace, rest and hope
Minnesota's first independent hospice for children and young adults with life-threatening conditions is finally opening its doors.
Crescent Cove in Brooklyn Center has been a dream in the making for years. And that dream started with Katie Lindenfelser.
"It was vital to find a peaceful and tranquil site like this," she said as she showed a visitor into a great room with a wall of windows overlooking a lake and windswept trees. The facility is colorful, even whimsical.
Lindenfelser said families with terminally ill children will come here for a break from long days and anxious nights. These parents are not only Mom or Dad, but nurse and caregiver.
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She said they can spend a few nights here with their loads lightened, knowing that nurses will provide round-the-clock care for their child.
"This will be a home where families come for a respite, for short breaks, for joy, rest and renewal," she said. But it will also be a place where families come as their child nears death.
It's a fact not lost on Lindenfelser. She is surprised by her own emotions when she walks into a bedroom with a crib. It's not just any crib.
"It brings tears to my eyes now, because this is the crib for my own little baby," she said. "Just to stage the room, I brought it into the home. Thinking of the impact that this kind of space will have for families on a daily basis who have a child with a life-threatening condition is profound."
Lindenfelser has had three children in the nine years she's been steadily building her dream of opening the region's first nonprofit children's hospice. She says there are only two others like it in the nation.
Back in 2008, she was a 28-year-old music therapist working at a children's hospice in Melbourne, Australia. It dawned on her that there was a need for something like that in Minnesota.
But the journey hasn't been easy. Crescent Cove is still raising money to cover the ongoing expenses of keeping the center running. The costs of providing nursing care, therapy and other supports are included in the $2.1 million operating budget.
Crescent Cove is relying on private contributions for now, but Lindenfelser hopes eventually to receive reimbursements from Medicaid and private insurance. Families will not be charged for their stays, Lindenfelser said.
And with the center finally scheduled to open in January, dozens of families are on the waiting list.
Sam and Melissa Bergstrom were among its first supporters. They say there was nothing like Crescent Cove when they needed it. Their first child, Ellis, was born in 2004 with a devastating heart defect.
"But the more important thing about Ellis is that he loved music and loved Elmo and us," Melissa said. "The only things he didn't like was sad songs. He'd say, 'All done! All done!' with his sign language."
Sam said he and his wife were two music teachers thrust into a world of ventilators, feeding tubes, dressing changes and medications. As they cared for their son at home, they never knew when his end might come.
"It was really scary," said Sam. "And being new parents, it was quite overwhelming. We had no idea what we were doing, but we did it anyway."
Melissa said a children's hospice home could have brought comfort not just for them, but for the whole family.
"They could answer questions of cousins and siblings and parents about what might death look like or what might it be like," she said. "We didn't have those answers and had a lot of fear."
Ellis died when he was 2 1/2. His body had rejected his new, transplanted heart. His liver failed. He lay unconscious for days.
Melissa remembers arriving at the most agonizing of decisions, when she and Sam told the doctors, "Enough."
"And they put him in our arms," she said. "We didn't shut anything off. We didn't shut anything down. But he just got into my arms, and we sang to him. And his heart stopped. It had beat solidly that entire last week, and then it just stopped."
Melissa said she planned to visit Crescent Cove for the first time on Thursday. What did she expect to feel as she walked through the doors?
"That is a good question," she said. "A lot of tears. A lot of tears."
And, she said, hope — hope for other families who finally have a place to go in their child's final moments.