Desiree Romero’s bridesmaids help her prepare for her wedding Sept. 3 at her mother's home in Tesuque. Desiree and Ryan Hanson, who both have Down syndrome, were married at the Cathedral Basilica of St. Francis of Assisi in a ceremony attended by about 700 guests. Hanging on the wall to the left are medallions Desiree was awarded in Special Olympics competitions. - Natalie Guillén/The New Mexican
Ryan helps Desiree with her dress before they take their wedding vows at the cathedral. - Natalie Guillén/The New Mexican
Desiree Hanson hugs her father, Joe Romero, during her wedding ceremony Sept. 3 at the Cathedral Basilica of St. Francis of Assisi. - Natalie Guillén/The New Mexican
From left, Ryan Hanson jokes around with his groomsmen, Drew Schulz and Taylor Lisenbee, before his wedding Sept. 3 at the Cathedral Basilica of St. Francis of Assisi. - Natalie Guillén/The New Mexican
Desiree Hanson's mother, Magdalena Romero puts on her pearl earrings at their home in Tesuque before Desiree's wedding. - Natalie Guillén/The New Mexican
Buoyed by families' support and encouragement, couple with Down syndrome say 'I do' to life
Deborah Busemeyer | For The New Mexican
Posted: Saturday, September 17, 2011 - 9/18/11
As young children, Desiree and Ryan Hanson both dreamed of finding love and getting married. Yet, when each was born, doctors provided little hope for the child's future, let alone for dreams.
It was the norm back then to expect that a child born with Down syndrome would never walk or talk. In 1983, the year Desiree was born, the life expectancy for a person with the disorder was only 25.
With the support of their families, however, the newly married Desiree, 28, and Ryan, 25, are looking forward to a long future together.
When Ryan talks about Desiree, words aren't enough. He clutches his chest, squeezes his hands into fists and pumps the air. He looks at her adoringly, holds her hand in both of his, then strokes her arm.
"She lets my soul come out," he says.
Desiree and Ryan's wedding has served as an inspiration for parents who have children with Down syndrome, such as Gay Romero, a friend of Desiree's mother, Magdalena Romero.
"The wedding is more of an illustration that these things are possible and to not let someone else tell us or tell her that her dreams and ambitions are limited," Gay Romero said of her 11-year-old daughter, Elena.
Beating the odds by defying the doctor
When a doctor told Magdalena Romero that her newborn daughter, Desiree, had Down syndrome, she had never heard of the condition.
"I think a lot of parents really protected their children and didn't have them out in the community the way they do now," she said.
But Desiree's parents, like Ryan's, shunned their doctor's routine advice to put their child in an institution. And both sets of parents made similar commitments to ensure their children would experience as much of life as they could — for as many years as possible.
"We knew we were going to take him home and love him, and that's how we would start," said Ryan's mother, Darcy Hanson.
David Tolleson, executive director of the National Down Syndrome Congress, can explain why the age expectancy for people with Down syndrome has more than doubled to 60 since Desiree's birth: "You leave someone unloved in an institution, without adequate medical care, with no stimulation and no involvement in their community, and they're not going to thrive," he said. "If you bring them home and involve them in their community, their church and work, if they can, you provide them adequate medical care — and lo and behold, outcomes are much better."
Forty percent of babies who have Down syndrome are born with a hole in their heart, which is now routinely corrected, Tolleson said. Heart surgery has become simpler, and views on the surgery's importance have changed over the years.
In the past, he said, "there was a thought that, 'They aren't going to have a life worth living, so why bother?' "
Children with Down syndrome now receive intensive physical, occupational and speech therapy. Ryan began receiving therapy three times a week when he was 2 weeks old. Desiree started with New Vistas in Santa Fe — an organization that helps people with disabilities gain a sense of independence — at the age of 3 weeks. Both children achieved common milestones that every parent anticipates: They sat up, walked and talked.
Both children benefited from large, extended families. Growing up in Tesuque, Desiree was surrounded by relatives. In Gillette, Wyo., Ryan grew up with two older sisters and four cousins who were close in age.
"He did everything they could," said Darcy Hanson, 50. "If he couldn't, they pushed him and made him. He was just one of them, and that was it."
Desiree and Ryan both can read. Ryan reads the newspaper every morning and has a subscription to Sports Illustrated.
The couple are award-winning Special Olympics athletes. Both began competing when they were 10. Between the two of them, they compete in swimming, soccer, golf, bowling, softball, poly hockey, basketball, volleyball, track and bocce.
It was a bowling competition about 15 years ago that brought Desiree and Ryan closer to their dreams of finding love. Ryan and his family had recently moved from Wyoming to Farmington, where they started coaching for Special Olympics and coordinating events. At a family bowling competition in Santa Fe, the Romero family creamed the Hansons.
It took several years and many competitions before Ryan called Desiree in 2008 to ask if she had a boyfriend.
"The first time I met her, she was glowing like a sun," Ryan said. "The first time I called her, I was scared. My heart was going pump, pump, pump. I said, 'Desiree, do you want to go out with me and be happy with me my whole life?' Her smile brings up my happy."
'They want to find their place in life'
Special Olympics provided Ryan and Desiree with a bigger community, as well as a sense of accomplishment and confidence.
"I think Special Olympics helps people realize their dreams because really, they want the same thing we want," said Randee Mascorella, executive director of Special Olympics New Mexico. "They want to feel like they are accepted. They want to be in a place of celebration and accomplishment. They want to have friendships that are meaningful, and they want to find their place in life."
Beyond winning awards, Ryan and Desiree have held leadership roles in Special Olympics. Both have been trained as global messengers, who speak to large audiences about the games. Ryan served as a Special Olympics board member and has competed in Ireland. Desiree has advocated for the program in Washington, D.C. Her picture appears on billboards advertising the games.
"The more ways we can provide opportunities for Special Olympics athletes to be in roles with their communities, the more understanding is created," Mascorella said. "A lot of fears are replaced with acceptance and support."
Carolane McNees has watched Desiree grow from a shy young girl at age 3 to the confident woman who was named one of Santa Fe's 10 Who Made A Difference for her volunteer work with seniors at the Luisa Senior Center and the Rosemont Assisted Living & Alzheimer's Community. McNees was Desiree's special-education teacher and has been her case manager for at least a decade.
"She's a great role model for people with disabilities and for people with Down syndrome," McNees said. "She's a high achiever, and it really shows the potential of what our people can do with their lives and what they can achieve. And I think a lot of that is her mom."
Magdalena Romero vowed to give her daughter the best life she could after she and Joe Romero divorced. Desiree was 13.
"I wanted to be there for her and make sure she was out in the community," said Magdalena Romero, 56. "I wanted her to experience as normal a life as she could."
Ryan's family also has made a commitment to help him reach for his goals and to overcome obstacles in his path.
His toughest challenges were not the other parents at school who tried to exclude him from mainstream classes or the kids who teased him for being different, said his oldest sister, Abby Hanson, who lives in Rio Rancho. His biggest obstacles were the times when people told him "no."
A school principal once asked Ryan's father, Mike Hanson, about his expectations for his son. "I said, 'I think Ryan should be able to do everything that he feels he can do or dreams he can do,' " Mike Hanson said. "The principal said, 'That's not possible.' And I said, 'How do we know that's not possible? I want just as much for my son that you want for your son.' "
Abby Hanson, 29, said the family's support and encouragement have pushed Ryan to achieve. "And it's just who he is. He was never going to be held back for any reason whatsoever."
Families foster the blossoming relationship
Abby Hanson helped her brother plan his marriage proposal on the Jumbotron at an Isotopes game in 2009. Desiree cried during the proposal, and she cried again when Ryan recently re-enacted the moment, bending down on one knee.
"I'm just very happy to be in my own wedding and to be a good wife," Desiree said. "I really want to be with him and make him as happy as I can."
Desiree and Ryan had dated other people in the past, but this relationship was different. Their families and friends knew it right away.
"When they see each other, they both light up," said Desiree's aunt, Cynthia Garcia, who saw the connection as soon as she met Ryan.
"Oh, the phone calls between those two," said Cynthia Garcia, who serves as Desiree's caregiver during the day, while her mom works in the Medicaid program at the state Human Services Department. " 'I love you.' 'I love you more.' 'No, I love you more,' " Garcia joked.
"The phone lines were madly burning up, and then the texts," Darcy Hanson said. "He was just happy."
People have asked Ryan's mother how this marriage could work. "All of Ryan's life, when he wanted to do something, it was, 'No.' We couldn't say no to this," she said. "I have no idea how this is going to work, but we'll just make it work."
Magdalena Romero couldn't say no, either.
"I have to let her experience life," she said of her daughter. "It is her dream."
Marriage between people who have Down syndrome is rare but becoming more common, said Tolleson of the National Down Syndrome Congress. His organization hosts an annual convention for people with Down syndrome and their families. In the last several years, the convention has included a session on relationships and marriages because of an increased interest in the topic.
Tolleson sees marriage as one more example of life changing for people with Down syndrome. Most now live in homes instead of institutions. Because of the passage of the Individuals with Disabilities Education Act in 1975, children with disabilities are guaranteed a public education instead of being shut out of mainstream schools.
"These are all issues that have developed during a long civil-rights struggle for individuals with disabilities to take their place in society," Tolleson said.
Sharon Cook, who has coordinated state services for Desiree for the last 10 years, often sees clients who are afraid to allow disabled family members to get involved in close relationships. Desiree and Ryan's parents are brave to let them get married, to provide them "the dignity of risk," she said, explaining the term means providing opportunities that give people a sense of dignity and respect.
Desiree and Ryan's parents are continuing to do what they've always done: helping their children be successful. The couple divide their time between Ryan's home in Farmington and Desiree's home in Tesuque. While they both are considered "high functioning," they have limitations, such as managing money and following directions.
In Farmington, Ryan is continuing his job as busser at the San Juan Country Club. Desiree will volunteer with the Sacred Heart Catholic Church in Farmington as well as help United Way put packets together for its fundraising campaign. Darcy Hanson will drive the two where they need to go. When they are in Santa Fe, Desiree will continue her volunteer work with seniors.
In addition to helping the two with daily living, their families are more intimately involved in their relationship than most parents of married adults. The mothers will accompany the couple during their honeymoon in the Bahamas later this month.
The families also act as mediators. Ryan's sisters have schooled Desiree in the necessity of compromise. Darcy Hanson took her son shopping to make his die-hard Broncos bedroom more acceptable to a woman. And when Desiree wanted the room to be decorated in hearts and roses, like her room at home, Ryan's mom helped settle the dispute.
A fairy-tale wedding
In the same way the families supported Ryan and Desiree's dreams of getting married, they did everything they could to make the couple's wedding a fairy tale, with a ceremony at the Cathedral Basilica of St. Francis of Assisi — before 700 wedding guests — and a celebration filled with hearts and roses.
Every aspect of the wedding reflected the importance of family to Ryan and Desiree — from Uncle Joe's music playing while the bride prepared for her wedding to the flower pin from Grandma on her dress. There was a story and a friend or family member behind it all.
Joe Romero of Rio Rancho, Desiree's father, said his daughter has shown him there are no limits to what she can do. "I wish I had her spunk and soul," he said. "This wedding is showing other people with handicaps that they can live their life. They can dream their dreams. It's all within their reach."
At a ballroom in the Buffalo Thunder Resort & Casino, Ryan took his bride in hand for the part of the wedding day he had most anticipated. They held each other as George Strait crooned about love: "I cross my heart and promise to give all I've got to give to make all your dreams come true."
The couple have had to let go of some dreams in the face of reality.
Living alone? Desiree says no — because of safety factors.
Children? It's a painful discussion that both families have had many times with the couple.
Ryan's comments about children are mixed. He said he wants to name a girl Whitney, after a neighbor. But he also says, "We have a dream once about having our own family, but it's way too hard for us."
For now, the couple are focused on their one big dream that came true.
"My dream is I found a girl, and I want to put this beautiful ring on her hand," Ryan says. "We want to grow old together. We want to share our walkers together. We have faith, trust and believing in us together."
He's already planning a party for their 50th wedding anniversary.
You must register with a valid email address and use your real first-and-last name to comment on this forum. Once you've logged into the system, you'll be able to contribute comments. If you need help logging in or establishing your new user name and password, please write us.For information on our community guidelines and updating your username to meet standards, visit http://sfnm.co/sfnmforum.
All users are expected to abide by the forum rules and and be courteous to other users. Comments can be accepted up to eight days following publication. After that, comments can be read but no new submissions made. Send questions to webeditor@sfnewmexican.com
IMPORTANT: Comments must be posted under your own full, real name. Anonymous comments and those posted under a pseudonym can be removed. Please consult the forum rules. If you have questions, e-mail webeditor@sfnewmexican.com.