Seeing the light: Mother of a child with Down syndrome says parents should enjoy the journey

That's when Soper decided to compile some of those positives into a book. She put postings on Web sites asking other mothers to share their experiences. "We got such enthusiastic response." She ended up with 63 stories, which she has compiled into a book called "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" (Woodbine House, $18.95). Already, she says, it's going into the second printing. "I feel like it is a unique and valuable collection."

It is particularly timely in that guidelines for genetic screenings for pregnant women have changed, she says. In the past, women over 35 or who were at high risk were offered screenings, but for the rest, there was only a blood test, which was not accurate, says Soper. "Now the American College of Obstetricians and Gynecologists are recommending new first trimester tests for every woman. My concern is that if women get prenatal diagnoses, what kind of support will they get? If they are handed a list of possible complications, and a 'so sorry,' is that enough?"

She cites one study that found that the majority of medical professionals do not give adequate support or updated or balanced information to parents facing a prenatal diagnosis of Down syndrome.

"When we started this project, we didn't know new guidelines were coming, but it turns out that the book is coming out at a time when it is desperately needed."

There is some controversy about the new guidelines, she says. One reason for the shift is that pregnancies are easier to terminate during the first trimester. "The current termination rate with a Down syndrome diagnosis is 90 percent."

Her book, she says, "has no political agenda. We only have an educational agenda. We have a wide range of perspectives. We have women with different political and religious and ethnic backgrounds. We have pro-choice and pro-life views. The range of women is one of the most significant things about the book. And they all say the life of a child with Down syndrome is something to celebrate." Potential parents need to know that, says Soper.

Also called Trisomy 21, a vast majority of cases of Down syndrome occur when a person is born with three of the 21st chromosome, rather than the usual two. The extra chromosome alters the development of the body and the brain. It is the most common genetic variation, happening on average once in every 730 births, the book notes.

It occurs among people of all races and economic levels, and affects more than 350,000 American families directly — many more indirectly. "It seems like everyone knows someone affected by Down syndrome," says Soper.

She wants everyone to know how much Thomas, now 1 1/2, has brought to their family. He is their seventh child, "and he is just adored. The other kids fight over who gets to sit next to him and to play with him. He is a delight to be around."

"I love him to death," says 14-year-old Elizabeth. "He's my favorite brother — and I've got five of them."