Broken hearts

Brian and Kristi Rasmussen's problems run deeper than anything a skilled surgeon can fix. Both are afflicted with heart disease, which has put them through six surgeries. They fell in love almost 10 years ago, and married on a hot August day. Since then, they've been struggling to get by, jumping from home to home and job to job. Every day brings uncertainty. Their one hope: A better life for their two children.

It's a love story that started at a Carson City casino.

At first, Kristi wasn't attracted to Brian Rasmussen, a rail-thin security guard at the Ormsby House. He befriended her parents first. Brian found he had something in common with Kristi: Both of them had had major heart surgery Ð Kristi when she was 20; Brian when he was 14.

Brian gave her mother black licorice candies. Kristi thought that was sweet.

"She had a jealous boyfriend," Brian said. While he told the story, their 6-year-old daughter, Alyssa, crawled into his lap and curled up against his chest. She reached up and gave him a peck on the cheek. "I threw him out of the Ormsby House for being rude.

"I told her if she ever needed a shoulder to cry on, I get off at 11:30."

Kristi took him up on that offer.

"She soaked my shirt. I remember that."

He took her to Denny's and bought her dinner. He won her a bear in one of those claw machines. It had "I love you" written on it. They married on Aug. 16, 1997, at the Carson Valley Inn in Minden.

"We were late to our own wedding," Brian said. Kristi was nauseated. She was pregnant with Brian at the time.

The couple has another love story, this one all about Alyssa and Brian, 9.

Kristi was at a rest home recovering from her second open-heart surgery the same week that Alyssa was starting kindergarten and Brian was going to first grade.

Her husband checked her out on a day pass.

"I wasn't going to miss the first day of school - no way," she said, looking over at her daughter and smiling.

Kristi had chest pains all that week leading up to it. She knew if she told the nurses, they wouldn't let her go. She kept quiet. Kristi told them when she got back.

She was in pain - but that was a happy day.

•••

Brian and Kristi Rasmussen both have a connective tissue disorder that affects their cardiac valves. Only about 25 percent of Kristi's heart works as it's supposed to. Brian has the use of about 65 percent of his heart.

Kristi died twice on the operating table during one of her open-heart surgeries on June 27, 2005. She's had three major surgeries so far, plus the surgery to install a defibrillator. Her husband has had two.

"We have matching scars," Brian said.

The heart is a scarred symbol for the Rasmussen family. Kristin's pale pink scar starts below her neck and goes to her stomach. Brian's starts at his throat and stretches down past his rib cage.

Connective tissue provides substance and support to tendons, blood vessel walls and heart valves. They have Marfan syndrome, which has weakened their major arteries. It's a hereditary condition. Kristi has had massive heart congestion and scarring.

Kristi, 32, coughs and yawns through the day - no matter the time. Her defibrillator was implanted in November. It feels like a smooth, oval stone in her upper chest. When the defibrillator shocked her heart back into rhythm it felt as bad as a heart attack.

"It felt like somebody inside my chest with tweezers, squeezing a couple times. It was the weirdest thing I'd ever felt," she said while lighting up a Misty Light 120. Krisi knows she shouldn't smoke, but helps with her stress.

Brian, 41, gets winded after exerting himself for too long, which doesn't help in the construction field. In the slow season, like now, he doesn't find any work digging ditches. The family lives off Kristi's Social Security income - $415 a month. They live rent free in Washoe Valley with Brian's mother. The monthly check is eaten up by the cost of keeping the broken-down car running, buying stuff for the kids, plus her cigarettes and his chewing tobacco.

Brian said they've lived with his mother on and off for eight years. His goal is to have his own home. He is thinking about going back to being an emergency medical technician. He's not even sure if they'll take him because of his health. That's something he keeps meaning to look into. His wife will probably never be able to work a typical 9-5 job because of her fatigue.

Kristi knows the tragic figures in all this are her children.

"My kids deserve a lot more than they've gotten. It makes me feel bad for them."

•••

Alyssa's right brown eye drifts a little off to the side. Her dark blond hair is wild and reaches to her waist. She's energetic and eager to read from a story book about an ugly duckling.

Alyssa underwent laser eye surgery at 3 to correct her lazy eye. She got glasses, which helped a little more. She stepped on them a few weeks ago. Her mother hasn't made the time to get them fixed. She keeps meaning to. The newest catastrophe is that she will likely be held back in the first grade for missing too many days of school.

Kristi said it's because Alyssa often has to be kept at home because of bladder infections. Brian spent a recent Friday afternoon trying to figure out how to advance her. The teacher said Alyssa's really bright.

Little Brian is down about life. He has brown hair and sloping hazel eyes. When his mother spoke optimistically about the future, he cried that it'll never get better. It's strange for someone so young, Kristi lamented. But she knows why.

"Because they don't have security here," she said. "They don't feel like a normal child in a normal place."

•••

The kids sleep on the floor near their parents, who are on the couch. Kristi traces all their problems back to this: They don't have a home of their own.

"I want something to call my own," she said.

But Kristi doesn't know what to do to make that happen. Budgeting hasn't entered her mind because she thinks they don't have enough money to start with.

"I always feel like I'm walking around in circles. Nothing gets accomplished like I want it to. I have dreams."

She wants to see her kids "raised up right." She doesn't like squeezing the family into one room. There's no privacy. They all share a sitting room in a home where there are two unoccupied bedrooms. One is full of bad memories. Brian's brother, Wayne, hanged himself in that bedroom. The second bedroom is an issue of contention. It belongs to one of Brian's siblings, who only comes to stay a few times a year, Kristi said.

There's an almost visible tension between Kristi and her mother-in-law. She said this is part of the reason why she smokes. They walk past each other with little recognition.

The mother-in-law watched "The Price is Right" in the back room - where the family usually sleeps - while Kristi talked in the living room. A giant fern sucked up any light entering from the curtained windows. An ornate wall clock is stopped at 2:30.

•••

Whether it's Medicaid that won't pay out, or car problems that cost hundreds to fix, the Rasmussens can't seem to catch a break. They don't assign fault - they just resign themselves.

"It'd be awesome to wake up one day and have everything be perfect," said Brian.

"But it never does," his wife said.

"It's almost like you don't want to wake up in the morning, afraid about what could happen next."

They have the usual tension that comes with being sick: paying for it. They're uninsured, so government assistance covers the medical bills, one way or another. Kristi estimates Medicaid covered about $1.5 million of her surgeon's bills. Brian's most recent surgery cost about $500,000. His surgeon, Dr. Kevin Linkus, who practices at Saint Mary's, wrote it off.

If Brian works too much, the children's Medicaid will get taken away, he worries. Kristi's Social Security could also get reduced. When you're living on the edge of society, those threats are enough to keep Brian scared and working part-time.

The last time the family had its own home - HUD housing in Dayton - they lost it because they were late with the electric bill.

There is one failing that seems to dog the family: tardiness.

•••

It was back in August 2005 that the family - sans Kristi, who was recovering from her second open-heart surgery - arrived at Mills Park to pick up free school supplies for Alyssa and Brian. Both children needed a backpack and shoes. They arrived and waited in line at about 9:45 a.m. Those who left fully supplied, dragging away bags of free clothing, were in line at 8 a.m.

Alyssa clung to the waist of her dad looking disappointed when an organizer told them that supplies were exhausted. Alyssa left that day with only a used copy of "The Ugly Duckling."

One slip up - though it seems small at the time - can bring catastrophe later. Circumstances that may simply just inconvenience other families seem to throw the Rasmussens unpredictably off course.

After further inquiry about Alyssa's absence from school, which will probably lead to her getting held back, Kristi revealed that it may also have to do with how many times the children miss the bus. Brian has been held back once because of academic reasons.

Alyssa often sleeps in late and will sometimes throw a fit before going to school. When questioned about this, the little girl said it's because of her grandmother, who keeps the TV turned up loudly late at night, or because her dad, who is out doing the paper route, isn't available to drive them to school.

What would help them?

"It feels like it's not normal here," said Alyssa. In this complicated family, where stamps are exchanged for food and clothing comes as hand-me-downs from their aunt, Alyssa sounds a lot like her mother. They use words that most children their age have never heard.

For the Rasmussen children, health has a connection to money, which has a connection to the thing they want most of all: their own rooms.

"Medicare is something that can help you get more health," Alyssa said.

"It helps you get into stuff without no money," Brian said.

"It helps you get Social Security," Alyssa said. "That can help you get a house and help you get more help to get more food stamps and more stuff."

Their parents don't even know what could give them security. That answer hinges on so many other things: health, government assistance, making the right decisions.

The Rasmussens aren't even close to having all of these things figured out. But they are trying together.

• Contact reporter Becky Bosshart at bbosshart@nevadaappeal.com or 881-1212.