BY MARTA HEPLER DRAHOS
---- — TRAVERSE CITY — Nicki McFadden had three boys before she finally gave birth to a little girl.
So when she learned 8-week-old Ashlyn had Down syndrome, it was “devastating,” McFadden said.
“That whole first year was a blur. Plus I worried about everything under the sun. You worry about what’s going to happen later on, about other people’s reaction to her,” she recalled.
As it turned out, Ashlyn was one in a “bubble” of babies born with Down syndrome in the space of a few years, said Heidi Mueller, whose son, Joshua, was another. After discovering that their best support was each other, the babies’ moms got together and revived a long-slumbering peer group called the Down Syndrome Association of Northwest Michigan.
“It started out being more of a play group,” said Mueller, of Traverse City, now president of the association. “It was kind of social and kind of learning to begin with. Then we decided to make it more formal because we realized that one of the things we wanted to do was reach out to new moms. We realized how powerful and critically important a thing it was.”
Now the association provides accurate and timely information about Down syndrome so new parents can make educated choices. The group also can connect new parents with others who have stood in their shoes.
“We have people in the group who are willing to meet families here in the unit,” said Bonnie Cleland, a maternal/infant/child social worker at Munson Medical Center. “They’re a key component in our work and my work on my team. They’re often our first call.”
Down syndrome is a genetic condition in which a person has 47 chromosomes instead of the usual 46. In most cases it occurs when there is an extra copy of chromosome 21, causing problems with the way the body and brain develop and resulting in a combination of physical, medical, and cognitive disorders which vary in severity from case to case.
“It’s unexpected, but the grief is short,” said Mueller, of learning about the diagnosis. “We all have disabilities; some are more obvious than others. We work hard to promote the dignity and beauty of life and to let pregnant women know that if your child is diagnosed with Down syndrome, we’re here -- and we have so much good news to share.”
Geri Valentine wasn’t ready to hear that news when her daughter, Carmella, was born with Down syndrome in 2009.
“As was the case with most new parents, I was apprehensive and didn’t want to get involved at the time because I was overwhelmed with the diagnosis and trying to digest all that,” said Valentine, of Cedar.
But she said Mueller’s phone call, and the dozens of pictures of thriving kids on the association’s website, gave her much-needed encouragement.
“She said all the right things. I just remember her conversation with me being such a ray of hope and light. One thing she said is, ‘This is the best group you never wanted to be a part of,’” said Valentine, now an association board member.
Now 8, Ashlyn McFadden and her family — including brothers Dru, Caleb and Dylan — often participate in association outings like an annual Christmas party with Santa, walking or riding in the National Cherry Festival Junior Royale Parade, and movie nights at the State Theatre.
Nicki McFadden said the group also helped with gas and travel expenses related to Ashlyn’s cancer treatment and is guiding the family through the education system.
“Now that she’s in school, you get a lot of support: what to ask for, what to do,” said McFadden, of Traverse City.
Mueller said she encourages new parents to avoid exhaustive Internet research and to instead focus on their child and take one thing at a time.
“Sometimes too much information can be a bad thing,” she said. “Because some things (you read about) will never come to pass. So don’t overwhelm yourselves with all the scary things.”
She remembers an early peer visit from another mom.
“She immediately turned around and gave me this story of hope and love. She said, “Your baby is more alike than different, and you’re going to be fine. It’s going to be a different journey than the one you expect, but quite possibly a more beautiful one.’”