As she did so many nights, Martha Bouey roused from her sleep to check her son, Byron, for nose bleeds. And as she did so many nights, she fretted about him.
What was she going to do, what could she do, with her boy.
It certainly wasn't that she didn't want him. After all, two other babies with problems similar to his had died on her, and when Byron survived she felt nearly pure joy.
But now Byron was 13. And a half. And 5 feet 9 inches tall. And, after learning to walk at age 5, Byron was now learning to talk.
The doctors had diagnoses for Byron's conditions. He had been born with the fluid-enlarged head of a hydrocephalic, and the shunt inserted to drain off excess liquid still resided within his body. He was mentally handicapped, and physically too, because he had cerebral palsy. He had poor eyesight.
Her doctor's words were harder to process. Sensing her stress he told her to take time for herself.
But how could she when she had to help Byron dress, brush his teeth, comb his hair, eat? When she worked 40 hours a week, days, and her husband worked 40 hours a week, nights, so somebody would always be home with Byron.
Moreover, how could she take it easy when she fretted that "Byron needs more activities than I can provide."
Then Byron began exerting his teenage independence. "He's to the point," she says, "where when his mom tries to play games with him, he says, `No, Mom.' "
In the best of circumstances, Byron would simply play after school with neighborhood youths. But theirs weren't the best of circumstances. Byron needed supervision even more than he needed friends, and who would supervise - who could supervise - a boy like hers after school?
Bouey asked around town among those familiar with impaired teens. Only one name - Darcy Hupf - came up, as it has for other parents of preteens and teens with conditions like autism, cerebral palsy and multiple birth defects.
"I thank God every day for Darcy Hupf," says the mother of a boy about Byron's age and level of disabilities.
"Thank God for Darcy coming along," says a state child-services worker.
Last month the lives of Darcy Hupf and Martha Bouey twined when Hupf found room for Bouey's son in her special-needs program, run out of a well-worn, blue-shingle house in North Seattle, and now it's Bouey's turn to say, "Thank God." Already she is.
Darcy Hupf, she quickly realized, is the special answer to her prayers.
Roughly three years ago, when Hupf was pregnant with her third child, she decided the time was right for a challenge and a dream. She wanted to do what apparently no one else in this area of 2 million had done:
Develop and run an extended- day program for some of the untold number of kids who chronologically are too old for day care, but too impaired to be left by themselves. Girls old enough for makeup; boys old enough to shave. Often strapped into wheelchairs. Often unable to speak or incontinent or both. By law they can be in public schools till age 21. But before and after school and summers, what then?
Hupf called her idea Northwest's Child, and vowed she'd take anyone age 8 to 21, no matter how severe their permanent conditions, unless they were a danger to others or in need of intensive nursing care.
But she wouldn't call it a day care. She'd call it "extended care, out of respect for the teens who don't need day care."
However, until she approached Joe Haggerty, no one, including the people who run Seattle's public schools, wanted to lease space to her. Haggerty is the principal of Blanchet, a Catholic high school that owns an adjacent rental house on North 85th Street.
He sized Darcy Hupf up, decided "she was in it for the right reasons," decided that offering her a deal on the spacious two-bedroom rambler would live out Blanchet's Christian faith. So he reduced the rent to $600 a month and told her she could rip up the bathroom to accommodate wheelchairs and a diaper-changing table long enough for an 18-year-old.
Hupf would need it; she knew what she was getting herself into.
Years ago in Richland, as a high-school volunteer in a special-education classroom, she came across Stephanie. Nine years old, Stephanie was a handful, screaming and banging her head against things. She was deaf. She didn't know sign language, and teachers doubted she'd ever learn. Hupf determined otherwise.
For six months Hupf dipped Stephanie's fingers in milk, signed the word milk, gave the girl sips of milk. "One day she got it," recalls Hupf, who knew then she'd found her future.
Hupf went on to earn a special-ed degree from Central Washington University, work in several programs focused on handicapped children and later make her home day care available to the same type of preschoolers.
So Darcy Hupf had experience. What she didn't have was money. Or big-time connections.
When she first approached city bureaucrats about operating a business in a residential area, she recalls being told, "you're never going to be able to do this."
Likewise, when she showed her prized Blanchet house to the state worker who ultimately licensed Northwest's Child as a day care, he voiced doubts she could make it succeed.
In person, Darcy Hupf is not physically imposing. She's 34, tiny; she has long brown hair coifed casually and she wears mostly stuff like jeans. Not corporate at all. She's also married to a public-relations guy named Jim and has three kids, the eldest being 9. So like Sen. Patty Murray, it's easy to dismiss her as just a mom. At least initially.
Indeed, the people who took Darcy Hupf's measure probably didn't fathom the depth of her motivation or her pure pleasure at challenge.
"I'm not comfortable being comfortable," she says. "Once everything is going smoothly, I ask myself what can I add to it?
"This is a way for me to use al my knowledge and experience for something that had not been done."
Hupf got her zoning permit. She also got companies to donate most of the materials to renovate and equip the old house. She also got fraternity guys to paint it for free - and cajoled donated food to feed them.
Larry Levine, the licensor for the Department of Social and Health Services who originally doubted her dream would work, has become one of Hupf's biggest supporters.
"She's positive, enthusiastic and knows what she wants and what she's doing," Levine says. "One other thing - she does it without making a big deal about it."
By the time the program opened in June 1991, Hupf had also talked state agencies into letting her take in kids older than licensing commonly allows. The state also agreed to make them eligible for special funds.
These funds help their parents pay the $400 monthly year around tuition charge (the same price year-round, including school holidays, full-time summer care and two late nights a month). The rest of Northwest's Child's budget comes from fund-raising; Hupf has become a tenacious grant writer.
Recently, for instance, she asked the city for some of the funds designated for "at-risk youth" summer programs.
"My job was to convince them these children were at risk," she says.
"Of losing their families. People often ask: `Where were these kids before they had you?' "
Near desperation is often the correct answer. Indeed, many special-needs kids live with single parents "just barely hanging on, and when things get too tight, they give up the kids to (state) foster care."
The irony, Hupf says, is that the state then pays the bills. But if parents hang on "the funding is very limited."
The city bought her argument, and so officially at least, her students are "at risk." The payoff: $4,000, enough to significantly enrich the summer program.
That politically expedient label is about the only one Hupf is willing to stick on them.
While it's true that her charges have everything from Down syndrome to "severe developmental delays" (a catch-all term for multiple mental and physical problems), "I make it a point to not learn specific labels unless there's a specific medical need," she says. "One of our main policies is that they're kids first. Their disability is an afterthought."
As she talks several students fill what used to be the living room, but is now the main social center. Two computers, loaded with games, sit to one side. On the other, near the sofa, hangs a poster. It reads: "Never give up on anybody. Miracles happen every day."
On another wall are the center's goals: Encourage verbal communication. Improve self-help. Increase group interaction.
Hupf watches as Maleene, 13, walks up the front ramp, her rolling gait slow but steady.
"When you talk about progress, this is progress," she says. "Maleene used to have to be carried. Now she's walking."
Maleene is joined by pink-cheeked Jenny, 16. By Lisa, 18, with the beautiful dancing brown eyes. By Becky, an impish 9.
Then there's Jacob, 11; he has a musical giggle, a winsome smile, and he never makes eye contact.
And there's dark-haired Shawn, 21, and energetic Sergei.
Of these first seven arrivals, three are in wheelchairs and need to be fed and otherwise cared for. And virtually all are nonverbal.
That doesn't keep Hupf and the center's two teachers from talking with them.
"Jenny, Lisa's a member of the clean-plate club; she beat you," announces Tim Feeney, who like the other teacher, Laurie Morrison, has a teaching degree. Feeney has been spooning Lisa her snack.
Morrison deftly feeds Jenny apple juice and allows as how she really has "an ideal job. A lot of these kids have had their lives focused on their disabilities, their school programs, their physical therapy, so that sometimes the kid stuff gets overlooked. So we ask them what they like to do. We go on field trips, go to ball games, go swimming.'
Snack time finished, teacher Feeney paces Jacob through vacuuming the rug. Jacob is autistic, a baffling neurological condition affecting thought, perception, behavior and attention.
He needs such intense supervision that before Hupf accepted him, Jacob's single mom, Cheryl Gere, could find no day care for him - save one early, unhappy sojourn at a place that charged her double.
"On a day-to-day basis, I was a nervous wreck figuring out who would take care of him," Gere recalls.
When Hupf accepted Jacob, Gere heaved a mighty sigh of relief. "I can't say enough about Darcy. She's an exceptional person. She never loses it. When there's a problem she solves it."
With Jacob there are plenty of problems. Given the opportunity, he'll eat liquid soap, destroy and eat plants - or run fearlessly into a busy street.
The staff tries mightily not to give him these chances. "It's really planning more than anything," explains Feeney, who doesn't get angry when Jacob acts out. "His behavior is part of his disability. It's beyond his control."
About 18 months ago, Jacob amazed everyone by tapping out words, a laborious letter at a time, on an alphabet board. Being autistic he described as "inside out inside out."
Now Sergei is tapping out a message. Sergei is mute and has autisticlike behaviors. But he also has a strong sense of self - and behind his golden brown eyes he's bothered that others misread him.
"I am not silly Sergei," he types. "I am smart and can do many things other kids do too. Please help them understand how I am."
Illinois author Dale Fink is one of the few national experts on before- and after-school care for special-needs children.
A good program, he says, treats the kids according to their ages - not as younger than they are because of their disabilities.
Scenes from Hupf's program: her putting lipstick on 18-year-old Lisa; Feeney reading the sports pages to Eric, also 18.
Fink says a good program lets kids - especially ones who spend huge chunks of their time in therapy - unwind and socialize.
Scenes from the program: the kids running a community paper route, the kids recycling aluminum cans, all to raise money for pizza parties and movies; the kids going to the Monroe fair; the kids at Easter Seals Halloween dance. "We've done almost everything on our list except go up in an airplane," Hupf says.
And finally, a good program mainstreams kids; it doesn't isolate them.
Under principal Joe Haggerty, Blanchet students may volunteer, and last school year a half-dozen or more did. Often they just hung out with Hupf's students, soon coming to "see them as people like themselves," Haggerty says. "It's been a nice experience for both of us."
On pleasant summer days people around Green Lake can see Hupf and crew, including Bouey's son Byron, going swimming, to the library, to area restaurants. Byron is getting out and making friends - including a special one, a girl, at Northwest's Child.
As for Hupf, she vows to make "the kids visible and part of the community. They're playing an important role: They're neutralizing and educating their community."
That's an important goal for her. So is another: opening a second program, just like Northwest's Child, in another part of town. She's actively working on it now.
Only this time, no one is telling Darcy Hupf it can't be done.