Jonathan's secret uncovered

Jonathan met a waitress a few months after starting his job. They started dating and having protected sex. They later broke up, with her screaming inside Jonathan's trailer home that he had infected her with HIV.

Chris Schneider © News Good news: Jonathan and Amber enjoy a private moment at the doctor's office in Salt Lake City during a visit to check on her pregnancy. Both Jonathan and Amber were terrified when Amber's home pregnancy test turned out positive. Their mood turned to joy when doctors told them that neither Amber nor the unborn child were HIV-infected.

Though it wasn't true, there was a hard truth to it. Even in Vernal, Jonathan would not be able to separate himself from his disease.

But this was not the same scared little boy who had begged Neil to take him in. For years, Neil had challenged Jonathan to leave that boy, the one with the death notice, behind. Whatever lessons Jonathan had learned in Wisconsin — and there were many — this was the most important.

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Jonathan may not have come to Vernal seeking to put those lessons to the test. But the test was there waiting for him, and on almost every front.

He was working harder than ever, barely taking a break to eat. He fought constantly with his brothers; there's a hole in a door to prove it. He and Dee rarely spoke.

"Some days I think we've taken a step forward," Dee says. "Most days, it's like we've taken two steps backward."

The constant push-and-pull in Vernal wore on Jonathan. His T-cell count — a measurement of the immune system and the true marker of AIDS progression — dropped to its lowest point.

T-cell counts for healthy people range from 600 to 1,200 per microliter of blood. Full-blown AIDS is defined as 200 per microliter.

Jonathan's bottomed at 147.

He never talked of how sick he was getting. The sinus infections gave him migraine headaches that made his temples throb. The constant rashes on his body made his arms and chest burn and itch simultaneously. He escaped to the bathroom, closed the door and hacked deep coughs. He worked despite the cramps in his stomach, the effects of his drug cocktail.

He learned that not telling the world he had AIDS could be as difficult as dealing with a world in which everyone knew.

Jonathan thought he was hiding his secret, but by 2003 some people at the restaurant had suspicions. Three waitresses cornered Jonathan one day as they waited for their paychecks and confronted him with the rumor that he had AIDS. He didn't try to deny it.

One was Amber Padigimus, a 22-year-old with shoulder-length blond hair and eyes so light they shone like silver coins. Amber told her parents that week.

"One of our cooks has AIDS," she said.

It wasn't long before Amber was confessing to her mother that Jonathan had become her boyfriend, that they planned to live together, that they loved each other and someday might marry.

Amber declared that she wasn't afraid of AIDS, that there were medications for that now.

Amber's mother, Janice Van Tassell, a devout Mormon with a husband and five daughters, did not know much about AIDS, but she knew enough to be worried.

She called an AIDS hot line to learn more. She called her brother, a doctor, and asked what he knew.

Chris Schneider © News Mixed greeting: Jonathan meets Amber's family during a wedding party for one of Amber's sisters at Dee's restaurant. Another sister and her husband refused to come if Jonathan was cooking. Dee was angered by this attitude, but he and one of Jonathan's brothers cooked instead.

"I wouldn't live with him if I had a choice," Janice's brother told her.

Kevin Van Tassell, Amber's father, asked why she courted death so openly. Her matter-of-fact attitude toward AIDS terrified him.

"It's like we're dealing with a kid who's playing with suicide," Kevin Van Tassell would later say. "Like a game of Russian roulette."

Even Jonathan was worried. He made lists of why the relationship would never work. AIDS was No. 1 each time. "We can't do it," Jonathan told Amber. Amber didn't listen.

And AIDS wasn't the only problem Amber's parents had with Jonathan.

Amber was married.

Not only was she married, but she had two children. The marriage was falling apart, but the couple had yet to make the breakup official.

Jonathan later would apologize to Amber's family for living with Amber before her divorce was final. He loved her, Jonathan would say as he sat in the Van Tassells' living room. Kevin and Janice accepted the apology and promised that, someday, they would forgive him.

Chris Schneider © News Sharing good times: Jonathan and Amber laugh while crossing the street on a shopping trip after a doctor's visit in Salt Lake City. Earlier that day, Jonathan saw his doctor for his semiannual checkup to test his viral load and overall health. Jonathan was treated at the National Institutes of Health in Maryland as a child and received some of the first anti-HIV drugs. He no longer takes part in NIH tests.

Still, the Van Tassells agonized over Jonathan's and Amber's future as their talk of marriage intensified. They worried that he will die, probably before they do, leaving their daughter a widow. If Amber contracted HIV and then AIDS, she could die.

The children would be orphans, potentially left to their care. The full impact of their fears wouldn't hit Jonathan until he saw Amber's home pregnancy test.

'My baby, that's so cool'

The plastic wand glides over Amber's gel-coated stomach as she lies in a Salt Lake City gynecologist's office.

The lights are dimmed to give a better view of the black-and-white television screen overhead. A technician searches for a few seconds before an image appears. It looks like a pea.

"My baby," Jonathan says, fumbling for Amber's hand without taking his eyes off the screen. "That's so cool."

Three weeks earlier, in early January this year, the thought of a baby had terrified Jonathan.

His heart dropped when he spotted the pregnancy test in the bathroom trash can.

Amber was too afraid to call Jonathan at work to explain. She wanted to see him face to face; she couldn't believe it herself.

The two had been having sex for months, and twice the condom had broken. She was tested each time and showed no signs of HIV.

To use the analogy of her father's fear that she was playing Russian roulette, the gun's chambers had thus far come up empty.

Chris Schneider © News Expectant mom: Jonathan and family friend Janet Osherow size up Amber's growing belly during a vacation in Las Vegas. Janet worked at Camp Heartland, a Minnesota camp for children with HIV-AIDS that Jonathan attended. She has known Jonathan since he was 10.

Amber started vomiting three weeks after the last test, eight weeks after the second condom broke. They got in Jonathan's Jeep and made the three-hour drive to Salt Lake City where Jonathan's doctors confirmed that a child was growing inside Amber.

Jonathan held Amber and kissed her forehead. "We'll get through it," Jonathan assured Amber, trying to push away his fear. Amber was scared, too, scared that their baby would have HIV.

New medicine and better information about how the virus spreads have reduced the number of HIV-infected infants born in the United States. HIV- or AIDS-infected women give birth to some 300 HIV-infected infants each year, according to the Centers for Disease Control. Since only mothers can pass the virus to children, transmission from HIV-infected fathers is not tracked. Jonathan's first call was to Neil, who congratulated him, and then rushed to the Internet to search for the odds of passing HIV to a baby.

Amber's parents could barely speak. They waited a few seconds before asking the one question that scared them more than anything. Was Amber infected?

No, she responded.

Jonathan and Amber have returned regularly to the University of Utah hospital, and the cloud hanging over the pregnancy has slowly lifted. Their baby boy is expected in July.

After one visit to the doctor, Jonathan helped his fianceé from the table and kissed her cheek. The two walked down the hallway, Jonathan holding their baby's black-and-white ultrasound photo.

"Don't roll it up," Jonathan told Amber, batting her hand away. He wanted to frame it.

A birthday wish comes true

Jonathan Swain did not die.

His life was supposed to end in the winter of 1985 before the flowers bloomed again outside his mother's Lakewood apartment.

Chris Schneider © News Wedding humor: Alicia, 5, crawls between Jonathan's legs during his wedding to Amber at their home in Vernal, Utah. Richard Jolley, a bishop in the Mormon church, conducts the ceremony.

Sheila had gone to classes on how to cope with a terminally ill child; she braced for the withering, painful death her son would endure.

Then winter came and went, and Sheila wept during his third birthday, certain there wouldn't be a fourth. But the fourth year passed. And then the fifth.

On Jonathan's 10th birthday, as he blew out the candles and everyone clapped, his wish was to live to 20.

In 1985, when Jonathan was diagnosed, average life expectancy with a full-blown case of AIDS was less than two years, according to CDC statistics. There were 250 children diagnosed with AIDS during that year, and only 36 were still alive 12 years later.

Through improved drug therapies, life expectancy for AIDS is now six years and growing.

Studies are ongoing for those like Jonathan who have exceeded all expectations, as doctors try to determine what there is to learn from them.

Jonathan says he has been studied enough and no longer takes part, but his doctors are amazed each time he drives to Salt Lake City for his biannual checkup.

Even he sometimes wonders why AIDS has spared him. He considers himself a living miracle, and he works daily to keep his life going. Since 2002, he has taken his medicine religiously, never missing a dose.

On March 19, Jonathan exceeded his long-ago wish to live to 20. He turned 21.

"Happy birthday!" the chorus rang out at Amber's parents' house, surprising Jonathan after work.

Chris Schneider © News Giving thanks: Amber's mother, Janice Van Tassell, left, Jonathan and Amber bow their heads in prayer before dinner is served after their wedding.

Three months later, Jonathan realized another dream, one he first confided to Neil years before at Camp Heartland.

On a Sunday evening early this month, Jonathan and Amber were married.

Jonathan worried that his father wouldn't come, that old grudges still lingered. Amber and her parents prodded Jonathan to at least invite Dee to the last-minute event.

At 6 p.m. June 6, as Jonathan and Amber held hands in front of their fireplace, a Mormon bishop blessed their union. Amber's son tugged at her pink-and white-laced dress and her 5-year-old daughter turned cartwheels during the vows.

Dee, Josh and their wives were present at the ceremony. Amber's parents and her youngest sister were there, too. It was finally time for the Van Tassells to accept their newest son-in-law.

No one told the bishop that Jonathan has AIDS.

After the 10-minute exchange of vows, Jonathan hugged his in-laws, his brother and stepmother. He stepped to the side and opened his arms to Dee.

Father and son embraced.

The families later ate with the gold-plated forks that Amber's mother brought. Jonathan called her "momma" for the first time.

Chris Schneider © News A father's congratulations: Jonathan and his father, Dee Swain, embrace as Dee leaves after Jonathan and Amber's wedding. Jonathan was afraid his father would not come. But five minutes before the vows were recited, Dee walked through the door.

Dee left an hour later, again hugging Jonathan on his way out. He stopped at the doorway and turned around, a smile playing across his face.

"He looks pretty healthy for a dead kid," Dee said.

The day after the wedding, Jonathan and Amber returned to Salt Lake City. Amber got another blood test and her due date was solidified: July 22.

The two ate dinner with one of Amber's sisters. Another sister refused to come, upset that Jonathan — and AIDS — are now part of her family.

"One more on my side, one more to go," Jonathan said of his new sisters-in-law.

When Jonathan and Amber returned home that night, Jonathan walked into their sparsely furnished bedroom and looked at a framed collage of his childhood — pictures and mementos from the past. Jonathan with the oxygen tank. Jonathan riding his bike. Jonathan going to school.

He sees it first thing in the morning and before he closes his eyes for the night. It symbolizes the triumph of his life.

In the center of the collage is the funeral notice that his mother had printed for her terminally ill little boy:

Jonathan Dee Swain

God's little angel

Heaven gives its favorites early death. For death is no more than a turning of us from time to eternity.

But Jonathan Swain did not die.

Chris Schneider © News Looking ahead: Jonathan is reflected in the window of his home in Vernal, Utah.

On a recent Thursday night, Jonathan, Amber and Amber's parents ate at a Chinese restaurant in Vernal.



After the bill was handed out, the waiter dropped fortune cookies on the table. One by one, the cookies were snapped open. Jonathan smiled.

"This is beautiful," he said, looking at his future wife. "No one sees this one."



He put the fortune in his pocket.

"You will lead a long and healthy life."

sanchezr@RockyMountainNews.com or 303-892-2282 and schneiderc@RockyMountainNews.com

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