“Congratulations! Boy or girl?”

New mothers and fathers hear this joyful exclamation so often upon their little one's arrival that they might begin to take it for granted.

For parents of babies born with Down syndrome, however, the experience of breaking the big news can be as fraught with anxiety as it is bathed in joy.

Many Down parents report hearing few expressions of elation at all over their new family members — condolences are more common.

But the fact is, although it can take time to adjust to a child with special needs, most of these parents are delighted to welcome a new little life into the world. Their hearts ache when others fail to share their joy.

“I know of some parents of newborns with Down syndrome who received sympathy cards,” says Sheila Hebein, executive director of the National Association for Down Syndrome in Oak Brook, Ill., and mother of Chris, a 31-year-old man with Down syndrome.

While Hebein understands that some people feel awkward and are unsure how to react in the face of a disability, she is clear that Down children are to be considered children first and disabled second.

“From the beginning we told people, ‘You can call him disabled,’” Hebein recalls. “'You can call him delayed or retarded. We just call him Chris.’”

Hebein points out that, even today, many doctors are poorly informed about what a wonderful life people with Down syndrome can have — not to mention what rich blessings they often bestow upon the people around them.

The most difficult time for a family facing a prenatal or newborn diagnosis of Down syndrome, she says, is the time when they receive the news. At that point, good information is critical, for the negative picture that some misinformed doctors paint can lead to an unspoken pressure to abort a pregnancy.

“They'll tell you what people with Down syndrome can't do,” Hebein says. “I like to focus on what they can do.”

And why not? If Chris Hebein has any limitations, they are anything but debilitating. As a boy, Chris was a Boy Scout, an athlete and an avid outdoorsman. He graduated from high school at age 21 and today works full time as a mail clerk. In his free time, he socializes with friends, teaches aerobics and plays the piano. Chris is also an altar server at his parish. In fact, when the bishop visits, Chris is the first server they call.

“He is so reverent,” his mother explains. “He is such a holy person. What he brings us is immeasurable.”

“All children, whether they have Down syndrome or not, have gifts,” she adds. “Our job is to ensure that every person has the opportunity to share his gifts.”

The Glorious Un-aborted

The Cahill family from Naperville, Ill., found out the newest member of their family had Down syndrome before he was even born. Connor Cahill's mother, Pam, reports that the weeks following the diagnosis were excruciatingly difficult for her marriage. Although she quickly accepted the news and worked at gathering information about the condition, her husband, Bill, was despondent and favored choosing an abortion.

“He thought this would destroy our family,” she recalls. “I was strong enough to tell him, ‘I'm doing this with or without you.’”

Eventually, with prayer and counseling, Bill was able to accept the diagnosis. He and Pam educated themselves about the potential for people with Down syndrome. By the time Connor arrived, his mother, father and three older siblings were eager to welcome him.

Today Connor is a spirited 3-year-old who exceeds his parents’ and doctors’ expectations. He loves playing with other children, listening to religious music and watching Barney and the Wiggles.

Part of what makes Connor so special is the fact that he makes even small accomplishments a cause for celebration.

“Everything is a party for Connor,” Cahill says. “We are totally thrilled and surprised by him.”

From Grief to Gladness

Linda Barth, executive director of the Mile High Down Syndrome Association in Denver, laughs at the memory of her husband Greg's reaction when the doctor diagnosed their daughter Jamie with Down syndrome.

“He said, ‘Well, if she's down, how do we get her up?’”

As it turned out, Jamie “got up” all on her own. She graduated from high school, earned a black belt in karate, got her drivers license and now drives back and forth from work every day. She works full time in a clothing store where she is sometimes called upon to train new employees.

She also plays doubles tennis with her younger sister Stacey. In fact, Jamie's prowess on the tennis court won her a spot on Team U.S.A. that went to Ireland last year for the Special Olympic Summer Games.

‘They'll tell you what people with Down syndrome can't do. I like to focus on what they can do.’

“Jamie is an amazing young woman,” Barth says. “She loved school and has lots of friends. She has an amazing sense of humor and cracks us up all the time. She has shown us that small accomplishments can be just as fulfilling as big ones.”

Barth explains that, as parents of a child with Down syndrome, she and her husband needed time to grieve the loss of the “perfect” baby they expected to have. After that, she says, they developed new hopes and dreams for Jamie's future and they have not been disappointed.

“I always say that if I had known then what I know now,” she says, “there would have been no tears in the beginning.”

Brian Skotko, a student at Harvard Medical School and coauthor of Common Threads: Celebrating Life With Down Syndrome (Band of Angels Press, 2001), affirms that people with Down syndrome have special gifts that deserve to be cultivated.

“Limitations need to be replaced with expectations,” he says. “Physicians need to inform new parents of the positive possibilities for children with Down syndrome. Instead of assuming school will be overwhelmingly difficult, teachers need to educate people with Down syndrome just as aggressively as their peers. Pastors and religious leaders need to offer them many opportunities for spiritual development.”

Skotko points out that many people with Down syndrome have surprising talents and abilities that far surpass most people's expectations.

‘Limitations need to be replaced with expectations.’

“Research has shown that people with Down syndrome rival the rhythmic abilities of children without disabilities,” he says. “In a sense, the extra chromosome often means extra musical capabilities.”

As evidence of these special abilities, Skotko cites the examples of Sujeet Desai of Singapore, a 20-year-old musician with Down syndrome who just released his first CD, and Greg Hauserman, a 19-year-old who plays eight instruments and has even trained with the principal clarinetist in the Colorado symphony.

“If a parent just found out they had a child with Down syndrome, I would be quick to congratulate them on the birth of their child,” he says. “All life is remarkably precious, and persons with Down syndrome add to the richness of life.”

Shelia Hebein couldn't agree more. She recalls once hearing of a spiritual program for children with disabilities called “Whatsoever You Do for the Least of My Brothers.” She could not reconcile that title with her experiences with her son.

“People see those with Down syndrome as the ‘least,’” she says. “From my perspective, I see the opposite as more accurate. Perhaps the ‘least’ are those who don't recognize a gift when it's in their midst.”

Danielle Bean writes from Center Harbor, New Hampshire.