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When Tiffany Smith arrived at Ronald McDonald House with her husband and 2-year-old daughter, she didn't want to see or talk to anyone. She wanted to go to their room, close the door and rock her little girl, who had recently been diagnosed with acute lymphoblastic leukemia (ALL). But soon Tiffany was taking turns cooking meals with other families, watching movies in the common area and making friends.
"I'm not a people person," Tiffany says. "I didn't like being with a bunch of strangers, but now I love it; I don't want to go home. At first I was just real nervous and scared but now we all sit outside at night for hours, talking and laughing. Sometimes we don't go to bed until 2 in the morning."
Like the Smiths, most families who find themselves at the Ronald McDonald House arrive in a blur, overwhelmed, frightened, perhaps angry. Their children are sick; they have been plucked from their homes and jobs; their lives are suddenly being lived on a landscape of unfamiliar colors and textures. Everything that was true yesterday may no longer be so.
"When a family arrives at St. Jude, they feel as if they are in a unique position, as if no one understands what they are going through," says Brent Adams, director of Patient Housing at St. Jude. "They may have found out that they are coming to St. Jude some eight hours before and arrive with four tubes of toothpaste and only one pair of underwear. They tend to turn inward, feel guilt, let their thoughts fester. Ronald McDonald House is designed to encourage them to do the opposite.
The house that Ronald built
Lodge-like in design with lots of windows and streaming light, Ronald McDonald House is about community, about sharing and about creating special bonds with other families going through similar situations. For many families who have children in treatment at St. Jude, Ronald McDonald House becomes a refuge, a home away from home.
One of the largest Ronald McDonald Houses in the world and only one of two exclusively set up for patients and families of one institution, the Memphis house has 51 rooms and has welcomed more than 1,800 St. Jude families since it opened in 1991. "Our Ronald McDonald House is special," says Adams. "It looks like regular housing, but it's not. We have a huge cleanliness agenda because of the immunosuppressed kids who stay there. We have special filters, for example, to maintain certain air-quality standards. We pressurized the building so that when a door opens, air is blown out instead of being pulled into the building. That keeps germs and air particles out of the building. Most residential buildings do not have that level of air-quality control."
"Everything is by design at this house," explains Linda Miller, executive director of the facility. "Unlike most Ronald McDonald Houses, we are set up for the St. Jude kids who have cancer and other infectious diseases. We put our energies into catering to their particular needs." Also, most Ronald McDonald Houses are places where parents crash between hospital visits, not a full-time residence for up to 90 days. "We want this to be home for them while they are not 'home-home,'" Miller says. "Everyone who stays at the Memphis Ronald McDonald House is responsible for keeping their room clean and also for doing some communal chores like sweeping or taking out the trash. The chores give the families a sense of ownership in the house, help them keep busy, maintain a sense of normalcy."
The house's manager, Sherri Bushong Maxey, knows that it can be challenging to house 51 different families from 51 different walks of life with 51 different sets of values. "People lose the safety net of their own home and life overnight," she says. "Our house is set up to give them some sense of safety and normalcy. And the fact that they don't have to pay for anything is enormous. They still have their 'home-home' to pay for so to have the financial burden lifted here makes things a lot easier."
Unlike the hospital's other family housing facilities--Target House and the soon-to-open Grizzlies House--Ronald McDonald House is a stand-alone, not-for profit facility that is not owned or run by St. Jude. However, from Adams' point of view, "Ronald McDonald House and St. Jude are joined at the hip. We intentionally fuzz the line between the two organizations because there should be no line, especially from the families' point of view. Housing is an integral part of the healing process for the patient and for the whole family. We couldn't do what we do without Ronald McDonald House."
In spite of this partnership, Ronald McDonald House offers a necessary respite from doctors and nurses, charts and scans, pokes and prods, says Miller. "We do have lots of input and support from the folks at St. Jude, which is essential, but when families are here, they are away from the hospital."
Miller and her team attempt to maintain processes and standards similar to those of the St. Jude-owned housing facilities. Recently, Ronald McDonald House started replacing the carpeting with vinyl tile and simulated wood flooring. "Carpets and immunosuppressed kids don't match," says Adams. "There is no carpeting in Target House nor will there be in the Grizzlies House. Ronald McDonald House chose to meet that standard and has used its own resources to replace all the carpets in the facility."
The open, airy design of the building itself is no accident. The 51 rooms are hotel-like, each equipped with two double beds, a full bathroom, a TV, VCR, Internet access and a large walk-in closet, but the heart of the house is the common areas. Tucked into every nook and corner are plush sofas and arm chairs, with toys at the ready for small, busy hands. The house includes a teen room flush with a pool table, air hockey and video games; a pre-teen room; a computer room; three laundry rooms; and an adult exercise room. The facility will soon have an outdoor pavilion, which will include a basketball half court, picnic tables and playground. The two sprawling kitchens have a communal atmosphere (and a shared pantry stocked with countless donated items). And "cubby kitchens" allow two or three families to share amenities.
Rita Quinn, a retired school teacher, has volunteered at the Ronald McDonald House for three years. "What always impresses me is the effect the house itself has on the families," she says. "You see families come in. They are in shock, they're worried and scared. They're not sleeping or eating, and they're a bit angry that all this is happening to them and to their child. But within a few days, they start to mellow. It's fascinating to watch. They meet other families, talk and share in the kitchen or in one of the common rooms and they begin to feel less alone. They see that the house and St. Jude are here to help them. They start to loosen up. That edge they had when they arrived vanishes--disappears just like that."
"I have never been in a situation where people have been so generous," says Tiffany Smith. "There are schools collecting pull tabs, people donating knit hats for the kids for when they lose their hair and groups making dinners for us just because. If you can't do your chore one night, someone from another family will help, or a volunteer or someone from the house. No one could understand how much St. Jude and Ronald McDonald House do for us unless they were in this position."
Her husband, Adam, agrees: "We have hardly spent any of our own money. It's been such a relief. We have so much confidence in everyone--at the hospital with our doctors and everyone, and here at the house."
Ronald McDonald House could not function without its army of volunteers and the generosity of countless companies and individuals in the community. Any given week features several special events--from spaghetti dinners to arts and crafts. "We don't mean to be Disney World but we know the value of events," says Adams. "People often come to housing thinking it'll be sad and morbid, but it's nothing like that. It's anything but. That is why events sponsored by the community are so important.
"Running a place like this is a daily dance," he continues. "The people of Ronald McDonald House are the choreographers of that dance. It's their specialty."
As one of the primary choreographers, Maxey still marvels at the generosity of volunteers and donors. "Families are amazed and humbled that strangers would come, bring food, bring toys, milk, laundry soap," she says. "And it's not so much the activity or the donation itself; it's the coming and the caring, the thought."
After losing a child at St. Jude, one family has returned for several Christmas holidays to work at the house so that some staff could take time off. "Their child had spent half her life in Memphis," Maxey says. "I think they return as a way to give back to St. Jude, Ronald McDonald House and to the other families with sick kids who are going through a similar journey. They know the story. They can say that they understand. We can't say that. We haven't been there."
According to her parents, Avery Smith refused to walk or be put down when they first arrived at Ronald McDonald House. Now she trudges down the corridors as if she were "home-home," running her tiny starfish hand along the walls, pointing to this, babbling in her 2-year-old speak about that. Like many kids before her, she will no doubt find herself on the floor of one of the common rooms playing with a new friend. She might not be the same age or from the same country. She might not speak the same language or even know her playmate's name. But it won't matter. It's home, after all, at least for now.
Reprinted from Corridors autumn 2003