Sunday, May 15, 2011

Dallas couple with Down syndrome embraces joy, struggles of marriage

From the Dallas Morning News:

On a cold, gray afternoon, a young woman sat inside a brick duplex in East Dallas, waiting. It was 5:30 p.m. Time for her husband to come home.

She walked into the kitchen and took two plastic bags out of the refrigerator, a hot dog in each. One read, “For Christi, for Monday.” The other read, “For Austin.”

Christi had learned many things during her first year of marriage. Not to sweep dirt under the clothes dryer. Not to put her husband’s suit pants in the wash.

No one had thought she would ever fully live on her own, much less be a bride.

A bus pulled up across the street, and Christi headed for the front porch. Austin, a dark-haired 33-year-old carrying a brown leather briefcase, stepped off.

Christi’s face brightened.

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How they got there on that winter evening, with the microwave beeping and the dryer humming, is a story that spanned more than two decades and 2,000 miles, a story of two people who thought they would be alone forever, then met.

The story of Austin Davenport and Christi Hockel began with an abnormality in their genes, the presence of an extra 21st chromosome, or Down syndrome.

What that diagnosis meant to their parents was a million dreams that seemed suddenly lost. Kindergarten. Prom. Graduation. The grief almost swallowed them, and then it toughened them, and then it taught them to forsake the children they had longed for, and instead accept the ones they had.

If they hadn’t done that, if they hadn’t recast their dreams and rebuilt their plans, there never would have been a first kiss or a walk down the aisle.

It could have been a much sadder story.

Because they will tell you, that is how the story began. With heartbreak.

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Austin’s mother, Nancy Davenport, waited in her hospital bed after giving birth to her third child one night in 1978. Her husband had gone home to look after their other two children.

Finally an elderly pediatrician arrived, looking grave. Her son, he said, appeared to have “mongoloid” features.

The first image that came into Nancy’s mind was a picture from a college biology textbook, of a grown man wearing a diaper.

The doctor left, and Nancy lay alone again, overtaken with shock and disbelief. As it neared midnight, she rang the nurse’s bell.

“I want to see my baby,” she demanded.

A nurse arrived carrying a tiny bundle and laid it before her. Nancy burst into tears.

Nancy, then 33, carried the newborn home, full of questions and fears about how she and her husband were going to raise a disabled child, along with two others, then 4 and 7 years old. She didn’t have the immediate solace of Internet chat rooms or the instant reach of Google searches. Instead, she hit the library and began making calls.

Within six months, Nancy was on a plane with Austin to Seattle , where researchers in the Experimental Education Unit at the University of Washington were trying to prove that babies with Down syndrome could learn far more than anyone had believed. They helped her teach him to crawl, then walk, then talk.

The average baby needs only marginal parental guidance to learn those basic tasks. But children with Down syndrome — with about half the IQ of the typical child — must be dragged through their early development. It is tedious, pain-staking work.

Nancy, a former high school English teacher, was a goal setter, a To Do-lister. And with every milestone Austin reached, her vision for him became more clear: that he would be as much as he was capable of. That he would, like her other two children, have his own life, long after she was gone.

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And that is why she found herself at the public school nearly every day, asking teachers to accept Austin into their classrooms. She believed that if he were going to function in the “real” world, he needed to be around the “regular” kids.

Administrators in the Richardson Independent School District heard the hard stubbornness beneath her soft voice, and finally, by the time Austin was in the seventh grade, he was removed from special education courses and fully included, a rarity at the time.

She instructed teachers that, while he might lag academically, he should be expected to follow the rules — to sit in his desk, to raise his hand before speaking.

“I have concluded that people will put up with a lot — with someone’s inability to hear or walk or even talk — as long as they’re socially appropriate,” Nancy says. “That became my biggest goal for Austin, that he behave well.”

At home, when it was clear Austin was being defiant, she gave him two spanks with a wooden spoon, the same as her other two children.

“It sounds horrible,” she says. “But if you saw him today, you would say it worked.”

He was outgoing. Social. He learned to swing dance and sing on key and scored roles in the annual theater productions at Lake Highlands High, belting out the lines as the boxer’s manager in Guys and Dolls.

He graduated with his class, enrolled at Richland Community College, and then finally got a full-time job in the mailroom of a computer software company in East Dallas.

Then he wanted to live on his own.

Nancy and her husband bought a duplex off Mockingbird Lane. Austin would live on one side, and a schoolteacher from their church on the other, getting free rent in exchange for looking after Austin.

As Nancy prepared to leave him there for his first night, she braced for an emotional goodbye.

But Austin just smiled. “Goodbye, Mom,” he said, then shut the door and disappeared inside.

That night, despite her worries and fears, Nancy couldn’t deny a deep feeling of satisfaction.

At 23 years old, Austin had launched.

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Austin’s life began to unfold in the blocks around his duplex. He rode the bus to work every morning. He sang in the church choir. He was soon on a first-name basis with the wait staff at IHOP. His days, Nancy believed, were fun and full.

What she hadn’t anticipated was the void of his evenings and weekends. Austin now spent much of his free time alone.

At night, he fixed dinner by himself, usually a quarter of a deli roast chicken and some microwaved carrots. Then the duplex would alight with the glow of the television set, as he settled on the couch for hours of Full House reruns or superhero movies.

As the days passed, he seemed to grow sadder, quieter. He couldn’t always find the words, but it was clear what he felt.

Lonely.

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And just about then, just when his mother knew something had to change, he met Christi.

It was at the National Down Syndrome Congress in Minneapolis, in 2004.

Christi Hockel, then 25, was born in a small town outside San Francisco, the youngest of six children. She, like Austin, had accomplished more than anyone thought possible. She had danced as Clara in the Nutcracker ballet and could recite lines from Shakespeare.

Among the hundreds of teens and young adults at the conference, the pair stood out. They were among the most social and independent. They were drawn to each other, their parents believed, because they could talk to each other.

At an evening dance, as the conference drew to an end, Austin walked toward her.

And this is how Christi remembers the rest:

“Something in his mind said, ‘I want to dance with this girl.’ He came over and asked me to dance. I said yes.

“Then I guess I made the first move. I kissed him. I kissed him that night … the first night we met.

“And I’ve loved him ever since.”

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After the conference, they ran up a phone bill of hundreds of dollars. Then Austin flew to California. And Christi flew to Dallas.

Before long, they approached their parents to ask for something no one had dreamed possible.

They wanted to get married.

Austin’s mother was reluctant.

She still spent a significant amount of time looking after Austin. Did she want to take on responsibility for Christi, too?

And Christi’s parents didn’t know if their daughter was prepared to live on her own, away from the large network of family in California.

“Wait until you’re 30,” Austin’s mom, Nancy, told them.

They waited the three years. Then, after Austin’s 30th birthday, they came back and asked again.

One afternoon, Austin wept in the car.

“I’m lonely,” he told his mother. “I want Christi here.”

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Christi wore a lace embroidered gown and carried red roses as she walked down the aisle. Before a crowd of 250, the couple pledged to spend the rest of their lives together.

Sitting in the first pews were their parents. Christi’s had been married for 49 years, Austin’s for 43. They knew how to make a marriage work, and they also knew how hard it can be. They were prepared to help this one, with all its complications, succeed.

Christi and Austin flew back to Dallas together in October 2009. Christi unpacked her bags in the duplex, which quickly filled with evidence that it was now her home, too: a Tinker Bell nightgown in the closet, a bottle of Lady Stetson perfume on the vanity.

Like many bachelors, Austin had some difficulty adjusting to the presence of his wife — and all her stuff — in his home. He sometimes got frustrated by the dozens of colored pencils she left scattered across the kitchen table, where she worked on her My Little Pony coloring books.

While Austin was at work one day, Christi walked to the Dollar Tree and bought several packages of glow-in-the-dark stars. She spent hours sticking them to the bedroom walls. When Austin returned from work, she guided him to the room, then turned off the lights. The room glowed.

“Look, honey,” she said with excitement.

But Austin frowned. He didn’t like it.

To help guide them through the conflicts, Austin’s mother found a young married couple, a seminary student and her husband, to live on the other side of the duplex. They took Austin and Christi grocery shopping and kept track of their whereabouts. In exchange, they received discounted rent.

Emergencies did arise, such as the time Christi overfilled the coffee pot, sending water streaming into the oven as she baked a meatloaf. It tripped the circuit breaker and caused an explosion of sparks, a terrifying reminder of all the things that could go wrong.

Christi also had trouble adjusting to the freedom that came without the daily supervision of her mother. Right away, she gained 15 pounds, a dangerous health risk because of a heart condition.

“It’s scary, having her so far away,” says her mother, Judie. “I see where her weaknesses are.”

Christi has her driver’s license and can speak conversational Spanish, but has the dangerous habit of looking down when she crosses the street.

They work on those skills when Christi flies home to California every month to spend time with her family. After a day or two, she starts talking about Austin, and how much she misses him.

Before the couple met, Christi’s parents had thought her life was full, busy with hospital volunteer work and her large family.

But now, when she retreats to the apartment above her parents’ garage, they see the loneliness in the life she led before Austin.

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That winter evening in Dallas, as Austin walked up the steps, Christi stepped forward to meet him.

“Hi, honey,” she said, her arms circling his waist.

Inside, Austin took off his tie, and Christi carried the hot dogs to the table. They began to eat and talked about their plans for the evening — grocery shopping with the neighbors, then finishing Salt , the Angelina Jolie spy thriller.

Later, Christi put on her nightgown, and Austin wore his flannel pajama pants. Then they climbed into bed and said goodnight.

And there, beneath the glow-in-the-dark stars, they fell asleep together.