Aug. 25, 2006 -- The world hasn't seen many marriages like the one that was prepared for Carrie Bergeron and her fianc$eacute;, Sujeet Desai.
They would have two weddings, Hindu and Christian — so the plan went — and two magical celebrations. But more important, they were bringing their families; a community; their religions and a cause along with them — a cause that could have kept them apart.
Carrie Bergeron, 29, was born with Down syndrome. Technically, it means that she has an extra copy of a chromosome in her genetic makeup. As a result of this genetic abnormality, people with Down syndrome have learning disabilities that can range from mild to severe. Heart defects are common and there are also physical symptoms such as an enlarged tongue and extra folds of skin under the eyes.
Doctors used to brutally describe Down syndrome as mongolism and recommend that people like Carrie be institutionalized. But Carrie's parents sought care for her from the beginning.
"We had therapists and speech pathologists and people coming in constantly," said Carrie's mother, Peggy Bergeron. "They would come every week, two hours a week to work with us. So developmentally, we always knew where she was."
Despite her own developmental difficulties, Carrie grew up to become an advocate for others with Down syndrome. She earned a certificate as a teacher's assistant from a community college and works as a volunteer aide in a day care classroom at Upstate Cerebral Palsy's New Discoveries Learning Center in Rome, N.Y. But as a teenager, she knew there was something missing, and her mother noticed, too.
"When she was about 15, I really noticed the loneliness," Peggy Bergeron said. "It was looming, big time. And I just could see that when her sisters or her brother went off with friends, there was just a look in her eyes as if to say, 'I wish I could do that.'"
Carrie admitted that she felt ostracized from her friends.
"I was very lonely because my friends, they don't have any special needs," Carrie said. "They can do things that I couldn't do, like having a job … and also hanging out with their boyfriends and, and girlfriends. And I was very lonely because I didn't have anyone."
From Lonely to 'Care Bear'
Life changed in unexpected ways when Carrie met 25-year-old Sujeet Desai, who was also born with Down syndrome. His parents both work as dentists in upstate New York. As a child, it took a long time for Sujeet to learn the right words to express himself, but his parents found that music helped stimulate him. And although he struggled, he learned, and now he plays six instruments.
"It was slow and steady and he loved it," said his mother, Sindoor Desai. "And that's why he learned it."
Sujeet also entertains at nursing homes and events for people with Down syndrome. And when he saw Carrie Bergeron as she addressed a National Down Syndrome Congress in Pittsburgh, it was love at first sight.
"I said to my parents, this is the girl that I really want to date," said Sujeet. "I want to have someone in my life."
Sujeet has a special name for Carrie — a pun on her first name. "I call her 'Care Bear,'" he said.
The nickname never fails to warm Carrie's heart.
"And when he calls me 'Care Bear,' I feel so different and so special," Carrie said. "I feel like someone really cares about me, loves me, and wants to be with me my whole life long."
From Lonely to 'Care Bear'
Sujeet and Carrie began dating, supervised first by their parents and also by aides for people with Down syndrome such as Christina Schilling, who helps Carrie plan her days and get to appointments.
Carrie and Sujeet lived in different upstate New York communities an hour apart, so Schilling often drove them to meeting places at parks and restaurants located between their homes.
Their families were taken completely off guard when Carrie and Sujeet began to consider marriage.
"At first, we didn't take it seriously," said Sindoor Desai.
"I said, 'Come on, how could they get married?'" said Sharad Desai, Sujeet's father. "It's not possible."
The challenges for Down syndrome couples are numerous. They may require help for such basic activities as counting money, preparing food and arranging transportation.
Peggy Bergeron was concerned about Carrie "taking on the responsibility of being a wife full time … being the organizer … having to cook the meal every night; and if there's a little problem, having to work it through as we all do in all of our marriages."
Tim Bergeron, Carrie's father, worried about how Sujeet and Carrie would handle emergencies.
"My biggest concern was, in the middle of the night, if they have a problem, the lights go out, there's a thunderstorm or something and they get somewhat panicked, who do they call?" he said. "Who is next door or nearby?"
A Self-Determination Plan
However, people like Christina Schilling are part of a network that offers services to people with Down syndrome, helping them schedule their days and live more independently. Carrie and Sujeet both receive Social Security income. While people with special needs are often honored for achievements that go beyond society's expectations -- including their successful integration into mainstream schools -- their struggles with loneliness and sexuality are much less visible.
Their families of Carrie and Sujeet put their heads together, combining family support and available social services into what they called a self-determination plan.
"Part of the time, they will be on their own," said Sharad Desai. "But they will have services going to help them to do certain chores. Somebody would help them plan the menu, help them cook. And once that's done, they'll be on their own until the next morning."
The families located an apartment for Carrie and Sujeet near a hospital in Rome, N.Y. When an article on Carrie and Sujeet appeared in The Wall Street Journal, many more doors opened in the community.
"I've been overwhelmed," said Peggy Bergeron. "In Rome, when they became aware of Carrie and Sujeet, they have been there to offer jobs and help find the apartment. They're just opening their hearts to us."
Carrie's father was thrilled that the couple had a combination of resources at their feet.
"When we found a doctor who was thrilled that Carrie was going to be there, we realized, what a combination," Tim Bergeron said. "We have some medical assistance, and we have emotional assistance, too."
The Proposal and Decision About Children
The parents of Carrie and Sujeet met often to discuss the couple's plans. They came to an agreement, and told Sujeet he was free to propose to Carrie. She was unaware of what was about to happen.
At a musical show for a Down syndrome group, with both sets of parents attending, Sujeet, performing as the Phantom of the Opera, brought Carrie onto the stage. He interrupted his musical number and knelt in front of her, opening a rose to reveal a ring.
"Carrie Bergeron, I love you so much," said Sujeet. "Will you marry me?"
Carrie said yes. "And then I started shaking and crying happy tears," she said. "All I knew was that I was in love with him. And it was just magical … I was like on cloud nine."
It is rare but not unheard of, for people with Down syndrome to marry. The question of children was settled when Carrie decided to undergo a surgical procedure to prevent conception, since the likelihood of having a child with Down syndrome would be high. For Carrie and Sujeet to care for a child on their own was considered impossible.
"Children are a big responsibility," Carrie said. "And we just have to be responsible for ourselves, really."
Carrie and Sujeet were distinctly aware of their parents' nervousness about the wedding, and in private moments together, they prayed for the best.
"The love that they have, it's just so untainted," said Schilling. "A lot of adult relationships are very full of pretense and manipulation. And with them — it's just true, and it's just exactly what it is."
One Potential Cloud Over a Joyous Time
There was some bad news that could have potentially cast a cloud over the ceremonies. Tim Bergeron, Carrie's father, was diagnosed with leukemia and didn't know whether he would survive to attend the wedding. But in May he learned the disease was in remission.
"I think it will be a very rewarding time," he said just before the ceremonies, recalling professional advice that he and Peggy were given when Carrie was born. "When you have a professional saying that you may have to put your child into an institution, and then come to this point — all I can say is, thumbs up!"
Carrie and Sujeet were married in a Hindu ceremony on July 1, and a Christian ceremony on July 8. For each tradition, Carrie was dressed like a princess.
"You have written my life with your love for me," she told Sujeet during their vows. Sujeet, in the final ceremony, chose to express his feelings in music. He went to the church piano and played "For Once in My Life."
For their first dance as husband and wife, Carrie and Sujeet chose the theme from the film "Titanic," "My Heart Will Go On."
"It means no matter where we are in life — we will never grow apart," Carrie said. "If you really love somebody, never, ever quit."