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November 8, 2013

Extra special

GROVE CITY — Because National Down Syndrome Awareness Month is a celebration of special people, Polly Lindh put up a display at Beans on Broad in October to let others know that there are several in the community “rockin’ an extra chromosome.”

“I was just basically wanting to create an awareness in the community,” said Lindh, of Pine Township.

The window display included nine, poster-size photos of kids and adults in the Grove City area with Down syndrome, with a second window at the downtown coffeehouse that featured a paper quilt made by a special education class at the high school, whom Lindh contacted.

Parents she knew from a Facebook group called Mercer County Differently Abled and other venues send her pictures to make the posters, which include Kody, Emily, Grady, Thomas and Rachel.

Ava, who is 2 months old, is the youngest in the collage; the oldest is John, 48, whom Lindh met at Beans, which is owned by her sister, Micaela Brabel.

Josh, 22, is another older face in the group; Lindh had him in her fifth grade class when she was a teacher with Grove City schools.

“He was really my first experience with Down syndrome,” she said.

Then, of course, there’s Marley, Lindh’s 1 1/2-year-old daughter.

“If I hadn’t known Marley, I wouldn’t have known about the families (with Down Syndrome kids) in the community,” she said.

The Lindhs – including husband Eric – did not know Marley had Down Syndrome until “probably about an hour after she was born,” Lindh said. The couple also have a 3-year-old son, Bodie.

“It’s hard to describe, I don’t think there’s ever been a time when you feel so many different emotions simultaneously. You feel joy, but then mourn loss of the child you think you are having.”

Lindh was “glad I didn’t know,” she noted. “I think I would have read too much and worried too much because they are prone to a lot of different health issues.”

However, Lindh still would have given birth to her daughter had she known she had the the extra chromosome: “Yes, definitely,” she said.

“There’s not a lot of kids with Down syndrome around. Ninety-plus percent of the parents end up aborting them after getting a prenatal exam.”

The extra chromosome that causes Down syndrome can be at a higher risk for developing due to the age of the mother. “They promote testing for it, even after 35,” Lindh said.

She had a healthy pregnancy with Marley, however.

“How I look at it is if I could go back and change her and take away that extra chromosome, I would not do it now,” she said. “This is who she is to me. If I took away that extra chromosome, she’d be a different person. She’s brought us more joy than I could ever imagine in a very short period of time.”

Marley will do everything other kids do “but it will take a lot longer,” her mom said. When a Down syndrome child hits a milestone, “we really celebrate,” Lindh added.

Marley’s personality is “always happy and very easy going,” Lindh noted. “We’re very blessed. You can already tell she loves life. I know some people think that’s how they all are. It isn’t always the case. They can be a handful.”

The family hopes Marley is walking by January, when she’ll be in a wedding.

“She has therapy three days a week: speech, occupational and physical therapy,” Lindh said, through Mercer County Early Intervention, which provides the service until she is 3 years old.

“It’s been wonderful,” Lindh said. “Bodie looks forward to them coming. They are good about making him feel a part of it and make him help out.”

Lindh’s awareness efforts began when she sold 230 blue and yellow hair bows in March at Beans, in conjunction with World Down Syndrome Day on March 21. The more than $1,000 raised was donated to a family who is adopting a child with Down syndrome, Lindh said. “I wanted to come up with something else.”  

Besides the window displays, Beans was selling blue and yellow bracelets for $1; the proceeds will be given to Mercer County Differently Abled.

The new group takes “anyone with special needs kids,” Lindh stated, and gets together regularly for play dates at different parks in the county.

“We’re having a Halloween party at the end of the month,” she noted.

The group is trying to gain non-profit status. Lindh stated that Facebook has a group called Rockin’ My Designer Genes closer to the Pittsburgh area, specifically for families of kids with Down syndrome.

The poster display at Beans has generated “a lot of positive feedback,” Lindh added.

“People may know them individually. People just think it’s neat. You don’t normally see all those faces together at one time.”

John sent Brabel “a real cute email,” Lindh said, “about him being a star.”

“I want people to see their individual identity before they see the Down syndrome,” she said.

This story was published Saturday, Oct. 19, 2013.

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