Quantell Wood is having far too much fun to take his mother's phone call. "I am very busy," says the 12-year-old, sounding like a put-upon exec while pushing a toy fire engine across the floor and listening to his favorite Barney CD. "I can't talk to you right now." Pam Wood is overjoyed by Quantell's brush-off. "No separation anxiety there," she says, laughing at how carefree her son sounds. Just like any other kid at a weekend sleepover.
But he is not like other children. Quantell, who suffers from a host of birth defects and developmental difficulties, has rarely spent a night away from his mother. His recently transplanted liver is failing, and he needs constant care to stay alive. He is fed through a stomach tube and gets three rounds of two-hour intravenous feedings daily. In a few hours, for the first time in years, Wood will get a full night's sleep.
For that she has Denise Callarman to thank. In 1999 Callarman opened Our Children's Coach House, a toy-filled, five-bedroom home in Naperville, Ill., where parents can leave kids with complex medical needs for up to two weeks in the care of skilled nurses and devoted volunteers. One of just a handful of such lodgings in the U.S., the nonprofit facility accepts kids up to age 18 and can handle 10 guests at a time.
It took Callarman, 37, nearly a decade of fund-raising and bureaucratic wrangling to shepherd Coach House—formerly known as Respite House—into existence. More remarkably, she did it while caring for her son Jake, now 13, who was born without an esophagus and for years was tethered to a ventilator. "I used to imagine what it would be like if there was a place Jake could go where he'd be safe and have fun while I got some rest," Callarman says. "I decided to create that place for other parents and their medically fragile children."
In 1992, two years after she began her mission, Callarman met a neighbor, Leann Lazzari, whose son Danny was also dependent on a ventilator. When Callarman told her about her plan, Lazzari, now 43, said, "Sign me up!" They became a team, writing grant proposals, holding fund-raisers, lobbying politicians and attending medical conferences. "We had to get physicians to buy into this concept to give us credibility," says Callarman. She was not above applying physical pressure—albeit with humor. When a doctor on her board hesitated to sign incorporation papers, Callarman reminded him that she had signed every form he'd given her during Jake's hospitalizations. "Then," she says, "I grabbed him by his tie and said, 'Now it's your turn. Sign!'" He did.
Pam Roman, former administrator of the Ronald McDonald Children's Hospital at Loyola University Medical Center, calls Callarman a pioneer and hopes to see Coach House emulated nationwide. "The good news is that we're saving many more of these kids then we did 20 years ago," she says. "The bad news is that we haven't caught up with what a family needs in order to care for them. Parents barely have time to shower, much less to attend their other child's soccer game."
Part of the problem is a shortage of nurses. Even when families can find one, insurance companies often won't cover at-home care. At $600 a day, a sojourn at Coach House (whose annual budget is more than $1 million) is hardly cheap. But in most cases it is covered at least partly by health insurance or a state Medicaid program. Callarman waives the fee for those who can't pay, relying on donations from foundations and individuals.
To the parents of the more than 100 children who have stayed at Coach House, Callarman is a godsend. Leigh and Jim Gibson credit her with keeping their family strong. A business consultant, Jim often travels while Leigh, a former banker (and now a Coach House board member), cares for their kids, Rachel, 9, and Jay, 7. Both children have a genetic liver and bone-marrow condition and must be fed through a stomach tube every four hours. "It's easy to sleep through an alarm at night when you're exhausted," says Leigh, 3.8. "Jim would call from the road every morning to see if we were all still alive."
Along with high-tech medical equipment, Coach House brims with murals, books and games. "It's important to focus on kids' medical needs," says Callarman, "but not to forget that they are children first."
Callarman knows those needs well: She was a disabled child. Moments after her birth in Hinsdale, Ill., doctors told her parents, construction worker Ken Van Dahm, now 65, and real estate agent Carol, 61, that Denise had multiple birth defects—including malfunctioning kidneys—and would not survive. She spent her first year in the hospital and by age 5 had undergone 14 operations. Though she overcame most of her ailments before reaching adulthood, she believes her parents' marriage was a casualty of her condition. They divorced when she was 9.
At 14, Denise started dating Tim Callarman, a schoolmate three years her senior. "He knew what my disabilities were," she says, "and looked beyond them." The relationship endured. In 1984 she dropped out of the College of DuPage in Glen Ellyn, Ill., to wed Tim, now 40 and the owner of a house-painting firm. Denise couldn't have children, so the couple adopted Taylor, now 15, in 1986. Two years later they adopted premature twins Jeremy and Jake, despite Jake's medical problems. "It would tear me up for the rest of my life if I'd left that boy in the hospital," says Tim. Adds Denise: "They were both meant to be part of our family."
It wasn't easy. "Jake's constant needs put all of us at risk of failing," Denise says. But her desperation fueled her desire to help others in similar situations. "We bonded right away," says partner Lazzari, "laughing about all the things we'd been through with our boys." Their sons had some laughs too—at their mothers' expense. They would hold their breath, making their portable ventilators emit shrill alarms, then giggle as their moms came running. Danny Lazzari never got to see Coach House: He died in 1997 at age 8.
In 1993 Callarman and Lazzari wrote their first grant proposal together, asking DuPage County for $500,000. They got the money and used it to buy what became Coach House. Their continued lobbying paid off in 1995, when the Illinois legislature amended a health-care law to allow the establishment of respite-care centers for children with extensive medical needs. It took four more years of fund-raising and remodeling to make the home a reality. At the ribbon-cutting ceremony, both women sobbed. Says Lazzari: "All those pent-up emotions just came out."
These days the tears have been replaced with smiles. Jake is much improved, a seventh grader who rides his bike at a park near the family's three-story home in suburban Westmont. Callarman and Lazzari stay busy raising money to keep Coach House afloat. When her energy flags, Callarman pulls out a photo of herself as a girl in a wheelchair at a Chicago hospital. She is in front of a huge dollhouse encased in glass—a dollhouse that she and other ailing kids were forbidden to touch. "We would stick our tongues on the glass and the nurses would tell us to get our faces off it," she says. "I remember saying, 'I'll build my own dollhouse and let everyone play in it.' And that's just what I've done."
Christina Cheakalos
Giovanna Breu in Naperville
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