ST. LOUIS — In the eight months since their 18-year-old son was critically injured in a car accident, Jim and Kathy Moss have spent just one night in their own home.
That night, a prayer service for their son, Drew, kept them in their hometown of Herculaneum until 9 p.m. - too late to make it back to the hotel where they had been staying in St. Louis to be closer to their son's hospital bed.
And too late to move to a new hotel, closer to Ranken Jordan, a nonprofit physical rehabilitation center in Maryland Heights, where their son was to be transferred the next day.
Now, the Mosses are looking forward to bringing their son home - but it's an event filled with trepidation as well. A brain injury has left their son virtually immobile. They're facing more than $20,000 in home renovations to make way for his wheelchair and other equipment.
Like hundreds of families suddenly living with a disabled loved one, the Mosses have reached out to local agencies, including Adapt Ability in St. Louis and Disability Resource Association in Jefferson County.
And like other families, the Mosses are finding such agencies can help apply for grants. But waits can be as long as a year, with no guarantees, said Nancy Pope, assistant director of the Disability Resource Association.
A consultant from the Disability Resource Association recently visited the Mosses' home to suggest ways to make it easier for Drew to navigate. But the couple will have to hire contractors, schedule the work and pay for it.
The Mosses said they don't know where they would be without family and friends organizing fundraisers, the most recent of which garnered enough money to renovate their van.
"Most of us never think of these situations happening to us, but it's a whole new world and new way of thinking when it does," Pope said. "And right now, if people need to make their home accessible, it's very costly and something many can't afford, so their loved one ends up in a nursing home or some other facility."
As daunting as the task of turning their home into a physical rehabilitation center may be, the Mosses refuse to turn their son's care over to someone else.
They seldom leave his side.
They pay $45 a night for a hotel room two miles from Ranken Jordan, in addition to keeping up with the mortgage on their home. They said it's worth the financial hardship, because they never know when their only son might need them. They wish they could be even closer.
"It would have been wonderful, all those nights I laid awake, to be able to walk across the parking lot to come in and check on him," Kathy Moss said.
Other than hotels, Haven House is the closest option for housing that families like the Mosses have. But it's shared by families of patients at about a dozen hospitals and is seven miles from Ranken Jordan.
Jim Moss said a similar home at Ranken Jordan could be therapeutic for families.
"There would be other parents in the same situation we're in, and it helps to talk to others," he said.
Plans for a $3.4 million housing facility at Ranken Jordan are about three years away.
The facility could help educate families about what life will be like when they go home, said Lauri Tanner, executive director.
"We want to show them what's possible," Tanner said. "We want to teach them how to go to the store and the movies, so they don't feel stuck," she said.
In an effort to speed construction for Ranken Jordan and their own home, the Mosses recently worked with the nonprofit to apply to the TV show, "Extreme Makeover: Home Edition." Neither project was selected.
So, the Mosses' 1,500-square-foot, three-bedroom house sits nearly frozen in time as it has since Dec. 22, when Drew Moss lost control of his Pontiac Grand Am on a sleet-covered Festus road and slammed into a tree.
The red-striped shirt he wore in family pictures taken earlier that day hangs on a chair in his room, as if he threw it there yesterday. A schedule for martial arts classes that started in January lies by his TV. And his Christmas presents, still wrapped, sit on a wooden table he built.
At ages 49 and 57, the couple isn't sure how long they will be able to care for their son without a lift system. Jim Moss canceled back surgery in January. He has yet to reschedule.
"I always say, ‘Everything will work out,'" Jim Moss said. "But I'm really thinking to myself, ‘How am I going to do this?'"