Jana Brown didn’t believe the medical diagnosis, even after her daughter Brighton was born Oct. 4, 2017.
Blood tests after 12 weeks of pregnancy revealed an 88-percent chance that Brighton had Down syndrome. But a sonogram at 20 weeks showed no abnormalities. So the likelihood was reduced to 40 percent.
“I thought they were wrong,” Jana said. “I didn’t Google or research anything about Down syndrome. When she was born (four weeks early in an emergency situation), I still didn’t believe them.”
But while in the hospital for 11 days after birth, the diagnosis became official: Brighton Brown had Down syndrome. One of the nurses at Brownwood Regional Medical Center evaluated Jana’s state of mind and called Irene Holmes, whose 16-year-old son Titus is a popular Brownwood High School student with Down syndrome.
“That was so huge,” Jana said. “She (Irene) basically came and told me that everything was going to be OK, that we just had to live day by day.
“She is a sweet, kind-hearted person. We found out we had so much in common -- from our ages when Brighton and Titus were born to the years’ difference to our other children.
“We actually knew Titus even before Brighton was born. He’s always on the sidelines at the Brownwood football games,” Jana said.
The arrival of Brighton some 18 months ago has changed the entire Brown family -- Jana, 11-year-old brother Durham and father Brandon, a longtime physical education teacher at Coggin Intermediate School and second-year assistant baseball coach at Brownwood High.
Once in denial, Jana is now an advocate -- not only for Brighton and not only for people with Down syndrome, but people with all disabilities. With Brighton and Durham by her side, Jana recently attended the first recognition by Texas lawmakers of World Down Syndrome Day at the State Capitol in Austin.
In 2011, the United Nations General Assembly declared March 21 each year as World Down Syndrome Day. Jana, Brighton and Durham were among 80 people from across the state to participate in the first World Down Syndrome Day Celebration and Advocacy Day in Texas. They learned about bills before Texas lawmakers and urged legislators to support people with disabilities through bills regarding special education, employment and higher education.
Brown and her children met with State Representative Mike Lang (R-Granbury) and with the staff of State Senator Dawn Buckingham (R-Lakeway). “We wanted to meet with the legislators so they could put a face to the issues and see who they’re affecting with their votes,” Jana said.
“The biggest thing was showing them that we are real families and not just people trying to live off the government. We are working-class people that pay our taxes and just want our children to be treated the same as others,” said Jana, who works at Painter & Johnson Financial in Brownwood.
Jana also joined The Association of Retarded Citizens, or ARC Brown County, a local nonprofit organization that supports special needs individuals. ARC is currently involved with fundraising and grants for a project to transform Alcorn Park into Alcorn All-Play Park, a fun-for-all park, including people with disabilities.
Jana became involved with Brown County Parents of Children with Down Syndrome, a local support group. She also connected with the Upside Down Club of Abilene for loved ones with Down syndrome.
On social media, Jana started an Instagram page for Brighton called #theupsidetodownsisbright. Jana also posts a weekly Monday photo and progress report on Brighton called “Brighton Your Mondays.”
Jana and Brandon, who met in 2000 while attending Howard Payne University, have spoken to an Education class at HPU, plus a Texas Association of Future Educators (TAFE) class at Brownwood High to foster awareness of children with Down syndrome.
“There’s a grieving stage, and it’s mainly about what you thought your life was going to be and letting go of that because your life’s not exactly going to be like that,” Jana said.
“You feel overwhelmed at first, but a woman at The ARC (Sheila Dryden) that has a 40-year-old son (Lane) with Down syndrome told me not to get discouraged because tons of things have changed for the better in her son’s 40 years. But at the same time, so many things still need to change like funding for job opportunities.”
Down syndrome affects about one of every 1,000 babies born in the United States each year, and there is no cure. It affects people differently. Some require specialized education, but some can be in typical school classrooms. In adulthood, about 20 percent in the U.S. do paid work in some capacity while some require a sheltered work environment. Life expectancy has risen to around 50 to 60 years.
Jana involved Brighton in Early Childhood Intervention, which includes a speech therapist and a physical therapist.
“Brighton can stand up on her own, but she can’t walk yet,” Jana said. “You learn to celebrate every milestone. You embrace that you have a baby for a longer period of time.”
The changes the Brown family have experienced since Brighton’s birth have revolved around understanding and patience.
“It for sure opened our eyes to being accepting of all disabilities. A lot of times, people are judgmental. This really opened our eyes,” Jana said.
“We didn’t try to hide it. We put it out there. I wrote a Facebook post, asking for prayers because we wanted to get it out there that, yes, our daughter has Down syndrome. We didn’t want people whispering behind our back. It’s amazing how many friends have family members with Down syndrome that I never knew about.”
Durham Brown compiled a school project on Down syndrome that he presented in front of five classes. “It’s going to help him be a better person,” Jana said of Durham. “It’s making him more understanding and patient with other kids. He’s very protective of his sister and others with disabilities.”
More recently, Jana was thrust into the role of comforting a woman whose unborn great-granddaughter was diagnosed with Down syndrome. Jana passed on the comfort that Irene Holmes offered her.
“It was a Facebook friend from the Dallas-Fort Worth area,” Jana said. “She saw our posts about Brighton and didn’t know anybody else to call for advice so she called us. She was crying because she didn’t know how to act toward her granddaughter, the expectant mother.
“I loved being able to help someone else and to let them know -- like Irene let me know -- that it’s going to be OK.”