Condition doesn't define Emma

Cheryl and Kent Roberts have accepted having a daughter with Down syndrome. But they refuse to define her by that.

"Whenever someone asks, 'Is she a Downs child?' I say 'No, she has Down syndrome, but that's not who she is. She's a little girl,'" said Cheryl, watching her 5-year-old Emma read a book with Kent in their Coeur d'Alene home. "Yes there are some differences, but she's way more like other 5-year-olds than she is different."

Watching Emma for five minutes, there's little doubt she is a capable - and energetic - little girl.

On Monday, Emma's older brother Justin, 8, seized a pillow and declared: "Can you do karate, Emma?"

The little girl planted herself in front of the pillow, and at her brother's command, lunged her tiny fist forward.

"Ke-ya!" she declared as she vanquished the cushion.

The couple wants others to know what Emma is capable of, which is why Cheryl submitted Emma's photo to be part of a National Down Syndrome Society awareness campaign.

The photo of Emma practicing karate moves is among 200 images selected for a video about Down syndrome. The video will be played on the jumbo screen in Times Square in New York City this Saturday, as part of a kick off of celebrations for October, National Down Syndrome Month.

Cheryl hopes that when people see the photo of her daughter, as well as photos of others with Down syndrome doing regular activities, they will appreciate that individuals with Down syndrome can still lead normal lives.

"(My hopes for her) are no different than any other parent. I will not close a door to her," Cheryl said. "She has the potential to get married and work. She'll decide what she can do."

Cheryl acknowledges Emma faces some problems from her Down syndrome, a genetic condition where a person has 47 chromosomes instead of the usual 46.

Like others with the condition, it has affected Emma's development. With decreased muscle tone, the girl was walking at 19 months, later than typical. She is short for her age and has upward slanting eyes. Her speech is slower than normal.

But she is also keeping up with her fellow students at the Kinder Center in Hayden. Emma likes to read and tricycle, and when she comes to her brother's karate classes, she stands on the sidelines and does the moves with the class. She is eager to don her brother's karate outfit at home and practice with him.

"We're getting two for one (karate lessons)," said Kent with a chuckle. "She loves to mimic. If she watches something, more often than not, she gets it."

When she gets older, some things will come harder for Emma. Physical restrictions and cognitive delays might, for instance, make it hard to hold a job.

But Cheryl, who is a member of Down Syndrome Connections Northwest, knows many adults with Down syndrome who have married and hold jobs.

Kent's boss at Barnes and Noble had a daughter with Down syndrome who was a published songwriter.

"We don't know what she (Emma) is capable of, and we're not going to be told what she's not capable of," Kent said.

Cheryl admits when the couple found out days after Emma's birth that she had Down syndrome, the news was a blow.

There had been so many plans and expectations of what their child would accomplish, Cheryl said. She wondered if any of that was still possible.

"You just think, 'What does this mean for her?'" she said.

But within about two days they came to a revelation, Cheryl said, one that all parents eventually have to face.

"I thought, 'Wait. She's not here for me. These are my dreams, not hers,'" she said. "She's perfect just the way she is, and I'm going to be here for her."

Kent added that he isn't worried when he sees other girls Emma's age speaking clearly.

"She'll get there," he said. "When the child you hope and pray for is not the child you get, what happens is you start making new hopes and dreams for this one. It's not that your hopes and dreams die. It's just you have new ones."

Cheryl has quit her job as a dental hygienist to help organize the local chapter of Down Syndrome Connections, which promotes awareness of the condition and provides support for families and friends of individuals with Down syndrome. Cheryl helped organize the first meeting last March, and now about 100 families in the region are on the group's e-mail list.

She also arranged the first Inland Northwest Buddy Walk last year, an event to both raise awareness of Down syndrome and promote solidarity among those affected by it.

The second Buddy Walk scheduled this for 9:30 a.m. Saturday at Riverstone Park has already garnered 450 registrations.

"It exploded this year," Cheryl said. "It reassures me I'm not the only one. We just want to connect and understand."

There are more than 400,000 individuals with Down syndrome, according to the National Down Syndrome Society website. The condition spans all races and economic levels.

Even with all her confidence, Cheryl said, she still worries about the obstacles Emma will face.

She remembered years ago when Emma took a speech evaluation test. Cheryl was devastated when she opened a letter stating that her 2-year-old was functioning at a 6-month-old level.

"I just sat down and started bawling," she said. "What hurts me is this is always where the world will hold the bar. It's hard for me to realize that everyone's not going to see her for the beautiful girl she is."

But Cheryl reminds herself of what Justin said when he asked why she was crying.

"I said, 'Sometimes I'm still sad about Emma's Down syndrome,' and he said, 'Oh, I thought it was something really bad,'" Cheryl said with a laugh, smiling at Emma as she climbed back into her father's lap. "Nothing like a 5-year-old to put things in perspective for you."