Second of two parts
WHEN THE FIRST Ronald McDonald House was founded in Philadelphia, 30 years ago today, it was for people like Jason and Sophie Li.
Not that they ever dreamed they'd need it. On July 29th, when their son Alden was born, they assumed, like all brand-new parents, that their days would begin with his happy cries.
Jason, 37, would kiss the baby goodbye and leave for his job as a NASA program analyst, near the couple's home in Ellicott City, Md. Sophie, 34, would juggle care of Alden with her MBA classes.
Their evenings would be spent in tired contentment with the baby they named in honor of Jason's hero, astronaut Neil Alden Armstrong.
"It took courage and determination to get where he did," says Jason of Armstrong, "and I admired him for it. "
But one week after Alden's birth, his parents learned just how much their son would need Armstrong's qualities.
Alden had suddenly become breathless. Medical tests brought devastating news: he had an irreparable, congenital heart defect.
He needed a heart transplant.
"I was in shock," says Sophie. "My pregnancy had been normal. There was no warning, no signs. Everything was fine. "
His condition already grave, Alden was flown to Children's Hospital of Philadelphia. There, he waited for a donor heart.
"It was a nightmare," says Jason. "One day your wife is pregnant; the next day she has a baby who seems perfect. Then you find out he needs a transplant.
"It was surreal. We'd never even been parents before. "
Alden's diagnosis has shattered all of Jason and Sophie's expectations of their lovely family routines.
For the last 13 weeks, they have lived at Ronald McDonald House in West Philly, established to provide housing and support to out-of-town families with children being treated in Philly hospitals.
Sophie's day begins with an early-morning ride to CHOP in the house van. Her mother, who is staying at the house with them, joins her at noon.
At CHOP, Jason, who spends every night with Alden, updates Sophie on the baby's health. If Alden has had surgery - he has now undergone four procedures, to stabilize his condition - he may have fussed through the night. Jason then returns to the house and telecommutes, analyzing weather and satellite data for a NASA contractor long-distance.
"My boss has been great about letting me work from Philly," he says. "No one at work could believe what was happening. They really wanted to help us. "
At dinnertime, Sophie and her mother join Jason for dinner at the house. Afterward, Jason returns to CHOP, to again sleep fitfully alongside his son.
If Alden survives the wait for a heart - which is not assured - and the follow-up care a transplant requires, they will have spent nine months to a year living at Ronald McDonald House.
"Some days," says Jason, "I have a hard time remembering what life was like before all this. "
This is the world of serious pediatric illness, an even scarier place when it requires medical care far from home.
That is often the case for families using CHOP, which has become so renowned, especially in the area of cancer treatment and organ transplants, that parents from around the globe seek treatment there.
But, say the Lis , it would be far more stressful being here without the services Ronald McDonald House provides:
Private rooms, for $15 per night - or less, for those in financial need - for 44 families of hospitalized children. Free dinner, every night, made by volunteers. Shuttle service to and from CHOP and other hospitals.
And, most important, continual emotional support.
"I don't even get the chance to ask for help; everyone comes to me first to see how I am," says Sophie. As if her son's medical trouble isn't enough, she just underwent surgery back home for persistent postpartum bleeding.
She's sitting at dinner, which tonight is a barbecued-chicken spread prepared by the Verizon Telecom Pioneers. As if to punctuate her comment, a volunteer gives her a hug on the way to the buffet line.
"I'd never even heard of this place," says Jason. "Now I don't know how we'd live without it. How could we afford to live in a hotel for a year? "
He and Sophie have become close with other families whose kids are awaiting transplant.
One baby didn't survive the wait.
"That was very hard," Jason says, looking away. "Their baby was just so sick. "
What impressed him was how staffers and volunteers rallied around that family, forming a cocoon of love and support. Just the way they are now rallying around Jason and Sophie.
"They take care of every need," he says, "so we can focus on Alden. "
Since it opened its doors on Oct. 14, 1974, Philadelphia's Ronald McDonald House has moved from its seven-bedroom space at 4035 Spruce St. to a lovely converted mansion at 3925 Chestnut St. that, last year, housed 1,766 families from 48 states and 16 countries.
Its communal living and dining areas, gym, kids' playroom and teens' game room are designed to pull families out of isolation - the bedrooms have no TVs - and into a community of people with shoulders to lean on.
As one mother once told co-founder Jim Murray, "When I cry, they're my Kleenex. "
There are eight staffers, including a house manager who lives on-site with her family and a social worker who runs interference with hospitals and insurers. They're supported by 250 volunteers who work the front desk, drive the vans, baby-sit family siblings, lead outings and would probably stand on their heads and whistle if they thought it would comfort a worried soul.
"You've never met more loving volunteers," says house executive director Debra Roberts.
Their anything-it-takes gusto is echoed by a dynamic board, some of whom have lost children of their own, as well as a devoted friends-of-the-house group and generous support from local McDonald's owners.
But that's not enough for the house's other co-founder, Dr. Audrey Evans, who is clamoring for a second house. There is clear need: In 2003, 371 families were turned away for lack of space.
A soon-to-open "Ronald Room," on-site at CHOP, may help by offering parents a place to shower and sleep when they can't leave their child's side.
No doubt, Jason and Sophie Li will use it when Alden finally receives the heart that will, they pray, make him well enough to go home to Ellicott City.
Until then, their home is this special house in West Philadelphia, where they have forged dear connections under terrible circumstances.
"Home is where your family is," says Jason. "The Ronald McDonald House feels like home."
To read the first column in this series, click here.