Providence Sister Katherine Smith worked at the Providence Child Center from 1967 through 1989, the last 12 years as administrator. "It's not just a job," says Joann Vance, executive director. (Courtesy Providence Archives)
Providence Sister Katherine Smith worked at the Providence Child Center from 1967 through 1989, the last 12 years as administrator. "It's not just a job," says Joann Vance, executive director. (Courtesy Providence Archives)
Last October, 6-year-old Louis Carlson was fighting for his life.

Doctors didn’t expect him to survive, but Louis, born with a rare mutation of the STPB1 gene, pulled through.

It was then that a doctor told his parents, Jody and Dale Carlson, that they should consider moving him to the Providence Center for Medically Fragile Children. The physician had visited a patient at the center for 20 years and couldn’t say enough good things about it.

Jody Carlson was unimpressed. “At this point I’m thinking, ‘I don’t want to put my child in a cold, unloving home,’” she says.

She describes Louis’ room at their home in Yacolt, Washington, as their intensive care unit. “The baby had every type of equipment.”

But the Carlsons visited the center and were won over. “There are times in your life when you don’t even make the decision,” Carlson says. “God makes it.”

Before Louis moved, she, with the help of her older children, cared for him. “The therapist told me it’s now 20 people doing what I used to do,” she says.

That included not only Louis’ unending, specialized and exacting care but also driving him to therapists.

Since last December, Louis has lived contentedly at the center, one of about 50 children there now and one of thousands who have called the center home since it opened as an orphanage in June 1945.

Louis arrived just months before the center was set to celebrate its 75th anniversary.

Because of the COVID-19 pandemic, Joann Vance, executive director, has postponed the celebration until summer 2021 or even 2022.

A convent on the second floor

Providence Child Center began as Our Lady of Providence Nursery, an orphanage, in 1945, with a group of Sisters of Providence bundling over eight babies from the hospital next door.

A guild of laywomen sewed clothes for the children and volunteered in the nursery.

Even in its earliest days, the children included those with special needs. The sickest came from Doernbecher Hospital and the Oregon Crippled Children’s Division as well as from parents who realized they could not care for their babies. Providence Sister Dolores Schulte, a registered nurse, was in charge.

In the early 1960s the sisters transitioned the nursery into the Children’s Nursing Center, the first and for years the only 24-hour skilled long-term care facility for children in the Pacific Northwest. They have cared for between 50 and 58 children ever since.

Providence Sister Katherine Smith worked at the center from 1967 through 1989, the last 12 years as its administrator. In 1967, she, then in her 20s, and Sister Dolores, in her 60s, were the only licensed nurses at the center, both living in the convent on its second floor.

Sister Katherine promoted the new idea that they both needed a day off every week. That proved a conundrum when she caught German measles from the children, falling ill on a Saturday, Sister Dolores’ day off. “I didn’t have the heart to wake her up,” she remembers.

Sister Katherine notes the center’s staff and the sisters didn’t work alone. Pediatricians, neurologists, volunteers and the center’s guild members all helped.

Changes

There are fewer small children at the center now than in Sister Katherine’s days, and the Providence Sisters’ Montessori school (the first in Portland) is gone — it’s now the Portland Montessori School and is no longer associated with the center or Sisters of Providence. Sister Katherine, who celebrates her 60th jubilee this year, admires the 1995 building, since renovated. “When I was there it was ancient wiring and plumbing,” she says.

After Sister Katherine retired from the center, she contributed in a different way: networking the caregivers and their peers at more than 100 other facilities through what is now the Pediatric Complex Care Association.

Sister Katherine is convinced of the benefits of care for some medically fragile children in facilities, rather than in the family’s home. She cites the steep level of financial and emotional support that should be in place before a family should attempt home care. “There are so many parents I can think of who were exhausted by the time we had space for the child,” she says.

She compares the care for a child such as Louis to that of a seriously injured child. “You would take them to the hospital,” she says. “No family would be expected to care for them at home.”

Support for parents

Sister Katherine argues that there will always be a population of children whose care is complex enough and constant enough that it is cruel to expect that regular families should be able to provide it. “Pro-life has to be carried beyond the womb,” she says.

Louis requires 24-hour care, and when he was home the entire family helped — all eight other children, possibly excepting the 2-year-old. Jody Carlson oversaw it all, leaving her little energy in reserve for the other children. “Our family was so tired,” she says.

This summer was the first time in six years that the Carlsons camped. “I don’t know if I’ve let my car cool down,” says Carlson, who admits she feels guilty even in the midst of travel and fun.

“When you have a child with special needs, you go through a lot of grieving you don’t understand,” she says, remembering how when a wheelchair was first suggested for Louis she balked. “Then his wheelchair was so cute, and he was so happy with it. Then this home came, and it’s the nicest home ever. The grieving and the acceptance just coming and coming. My arms ache, and it’s sad, because he’s such a happy boy, who lights up the room. But as much as I miss him, I know it’s where he should be. The people there have so much love for their work and the children.”

Carlson gets regular photos and updates from Louis’ caregivers and therapists. Other family members enjoy visiting him virtually, something that makes Carlson so sad she cannot do it. “He’s a very touchy-touchy kid,” she says. “To talk with him on a screen hurts.”

Staff ask her for advice.

Louis thrives, Carlson tells them, on action and activity. She remembers the therapist who called when Louis seemed sad.

Carlson asked, “Did you fill his love bucket? He needs hugs and touch.”

“You were right,” she heard back later. “It calmed him down.”

“It’s not uncommon to hear from them daily,” she says. “I’m never left in the dark — never left with a question.”

Louis shares his room with three other boys. “He’s in a little bachelor pad,” Carlson says. “I could tell he was happy. If he hadn’t been I would have brought him home.”

Not just a job

Sister Katherine remembers counting up her staff at the center and realizing they’d all been there for either more than 10 years or for less than a year. “If it appeals to you, you’ll stay forever,” she says. “Some nurses want to work in the emergency room. Others are more comfortable in heart-to-heart relationships.”

“It’s not just a job,” agrees Vance, who was hired in 2008. “People don’t last if it is.”

Not only do caregivers nurture children who aren’t going to “get better,” they have to say goodbye to children, both those who have “aged out” and moved on to other care situations, and those who are desperately ill and who die.

“It’s the hardest thing, to lose a child,” says Vance.

Caregivers take time together when that happens. There have been several funerals at the center, and caregivers always take part. “They’re so connected with the families,” Vance says.

She understands how parents of children at the center feel. She would have faced the decision to acquiesce the care of her own daughter, who had cerebral palsy, had she lived longer. “She was my happy angel,” says Vance. “She taught me so much in 10 years — she brought me into pediatrics. It’s my calling.”

Vance says the contradiction between the magnitude of the Providence St. Joseph Health system and her “heart-to-heart” work at the center can feel confounding. “But this is the core of Providence,” she says. “The core is taking care of the most vulnerable.”