Written by Malinda Just Tuesday, 07 October 2008 14:20
“(The doctors) kept saying, ‘She has characteristics of Down syndrome, but we won’t know for sure until we get the test results back,’” Bruce said.
After a typical postpartum hospital stay, the Josts took Ella home, where they waited two weeks for an official diagnosis.
“(Ella had) low muscle tone, so she was pretty limp when you would hold her,” Bruce said. “She didn’t weigh very much, she didn’t have much muscle tone, she couldn’t hold her head and she didn’t move her arms a whole lot.”
Kimberlee added that Ella slept all the time and didn’t cry for the first 10 days.
“Even crying was a milestone for us with her,” she said. “All of that was scary for us, and that was also hard for us because we didn’t know what babies do.
“Now we know it’s not necessarily kids with Down syndrome that don’t cry and sleep all the time. But, we were ill-prepared to have a baby so small, and then to have a baby with Down Syndrome was on top of it.”
During the first hours of Ella’s life, Bruce and Kimberlee imagined the worst.
“Bruce and I didn’t know anyone with Down syndrome before we had Ella,” Kimberlee said. “So our thought process was very sad. We were sad about her future and we were sad about the quality of life she would have, the quality of life we would have with her.
“We didn’t know what she would understand, or what she could understand. We didn’t know anything, but we just expected the worst.”
Additionally, the doctors weren’t able to give the Josts information.
“In the beginning, (the doctors) couldn’t tell us much,” Kimberlee said. “And they still can’t tell us a ton.”
The Josts said the doctors believe Ella is high functioning, but only time will show what she will accomplish.
“Nobody will know (her level) until she’s older and we find out what she can do,” Bruce said.
Kimberlee said the lack of information was difficult.
“I think in the beginning, my biggest struggle was, when Ella was first born I felt like I had questions and I could ask my friends and they could tell me what they knew up to a certain degree, but I’d always leave feeling like, ‘But you don’t know,’” she said. It just wasn’t a complete answer to me because of Ella’s development.”
Despite a dearth of information, the Josts quickly began to settle into a routine with their newborn daughter.
“I think we really got into a groove with her by the time she was a couple months old,” Kimberlee said.
Kimberlee said it helped to get involved with online organizations devoted to parents of children with Down syndrome.
“That has helped me a bunch because when I have questions and I don’t know the answers, I can ask this group of mothers who have kids from just born to high school and college age,” she said. “So just to get a bunch of feedback has been amazing.”
Bruce also spoke highly of the Marion County Special Education Cooperative.
“They were there from Day 1,” he said.
MCSEC began visiting the Josts when Ella was 6 weeks old.
“We didn’t know (the organization) existed beforehand,” Bruce said. “I call it a lifesaver. It helped us focus and gain a goal or something to strive for.”
Even though Ella is enrolled in mainstream preschool with Head Start, and will begin kindergarten next year, the Josts continue to battle stereotypes, including their own.
“In the beginning it was a lot harder than it is now,” Kimberlee said.
Bruce added: “We had to get over our own stereotypes. Stereotypes are part of that acclimation process.”
The Josts said, overall, people treat Ella just like any other child.
“Actually, I think they treat Ella even better,” Kimberlee said. “She gets a lot of attention and we love that.”
One caution the Josts want people to be aware of is to stop using “retarded” as a slang word.
“It’s so hard because it’s everywhere,” Kimberlee said. “We don’t want our child to be a slang word—a negative, derogatory slang word.”
Bruce added: “And Down syndrome is not a bad word on the other hand.
“We know that’s what she has, and you can refer to her as that. She knows she has Down syndrome, we know she’s got Down syndrome, so if you’re talking to us about how development’s going, those are OK questions.”
The Josts said they have high expectations for Ella. They expect her to eventually drive, graduate from high school and get married.
To achieve those goals, the Josts believe home life plays as large of a role as mental capacity.
“Sometimes people aren’t really sure what she can do, or maybe let her get away with a little bit more, but she’s very on to that,” Kimberlee said. “Kids with Down syndrome figure out real quickly who will make them do things and who won’t, and for Ella, we expect a lot. She doesn’t get away with much around here, at least at home.”
And the Josts also know that reaching future goals will have a lot to do with the community.
“We love raising Ella in Hillsboro,” Kimberlee said. “We love it that people we don’t even know, know her. She’s like her own little superstar when she walks down the street, and I can’t imagine living anywhere else with her.”