Moms create Central Texas Down Syndrome Network

By AMY ROGNLIE | Photos courtesy of BETH EDWARDS and STACY HODGE

Stacy Hodge and Beth Edwards are a dynamic duo of moms with big dreams for their own children and for others with Down syndrome in Central Texas.

“We call ourselves the lucky few, meaning that we are the lucky few to be blessed with these very special individuals,” says Hodge, Salado mom of 2-year-old Brynlee, who has Down syndrome.

Beth Edwards agrees. After having five biological children, she and her husband adopted a child from Taiwan with Down syndrome.

“After we adopted our first child with DS, we realized that we really enjoyed that extra chromosome,” Edwards said. The couple went on to adopt two more children with DS, all from Taiwan. “I have long felt that they bring out the best in people. Wherever we are, my son will just reach out to take someone’s hand. Even someone who is grumpy will end up smiling and talking to him.”

Down syndrome is a genetic disorder caused by an extra copy of chromosome 21. According to the Mayo Clinic, Down syndrome varies in severity among individuals. The condition causes a lifelong intellectual disability and developmental delays. It’s the most common genetic chromosomal cause of intellectual disabilities in children. It also commonly causes other medical conditions, including heart and digestive system problems.

“It is hard to put into words the feelings parents experience with having a child that is different — or differently abled,” Hodge said. “The world has such an incorrect view of the capability of the individuals with Down syndrome. I am constantly educating people everywhere we go, because we need to change the narrative and perception. Brynlee has brought so much light and joy to our family’s life, and we need to tell the world about her and this special community.”

In Hodge’s case, she and her husband had already had two children before she became pregnant with Brynlee. It was an emotional journey for them when they found out that the baby she was carrying had Down syndrome.

“I’m a (registered nurse), and when I found out I was expecting a child with DS, my heart broke. The horrible things they teach in nursing school! My expectations were of an individual that would be very ill and not be able to communicate,” Hodge said. “After my test results, my friends and family kept telling me stories of women whose tests were wrong. But everywhere I went, I kept seeing people and children with DS. I know that God was softening my heart.”

Having a child with Down syndrome, or any disability, can be isolating, especially for moms. Finding a community locally was challenging.
Enter Edwards, who was also trying to connect with Down syndrome families in the area. She had begun a Facebook page in the Fort Cavazos area and hosted a few get-togethers. She and Hodge bonded over being the “older moms” in their 30s and began to brainstorm ways they could bring more opportunities and support to families in Bell County, since most Down syndrome organizations are in larger cities, such as Austin or Dallas. The two started exploring options and resources to begin a Down syndrome nonprofit in Bell County.

Then, little Brynlee had the honor of being involved in the National Down Syndrome Society’s annual event in New York City. The society has a Buddy Walk in Central Park, and every year they choose 500 photos to be placed on the jumbotron in Times Square. Brynlee’s photo was chosen, so the entire Hodge family traveled to NYC to attend their first National Down Syndrome Society event.

“It was truly an amazing experience,” Hodge said. “We immediately felt like we had become part of a new family. Everyone was so loving and welcoming. That is the feeling I want to bring to Bell County … a place where every family feels they are part of a bigger family.”

The paperwork has been filed for the nonprofit named Central Texas Down Syndrome Network, and the two moms are now realizing their dream to have a nonprofit group in Central Texas that offers opportunities for sports, dance, socializing and educational opportunities for children. In addition, they hope to provide educational opportunities for educators and bring awareness about Down syndrome to the community.

“I didn’t know it way back when Brynlee was conceived, but by opening my eyes to others with DS, God was giving me a God-wink, telling me that Brynlee was His plan,” Hodge said. “And what a magnificent plan it is!”