How A New Baby Helped One Mom Find A New Passion

Posted on Mar 27th 2017 by Karen Thompson

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Stephanie Westerman, Program Manager, Enterprise Learning & Delivery, has a passion. Her true desire is to be more engaged in Down syndrome advocacy and make a difference for people with intellectual and developmental disabilities. And that passion came to her in the most unexpected way – with the birth of her daughter. Here’s how her story, her passion, began.

Stephanie and her husband had been trying for some time to have a second child. To her joy, she gave birth to her daughter, Juliette, on May 30, 2016.

All signs before Juliette was born were normal and all prenatal testing was clear and negative, but on the day after their daughter was born, doctors told Stephanie and her husband they saw signs that concerned them. Blood work was ordered and a lot of possibilities were thrown at them – all of them frightening. Until then, there had been no indication that her baby would be anything but perfectly healthy, so Stephanie was shocked, confused, and scared. 

“I thought surely they were wrong and she was perfect,” recalled Stephanie. “I couldn’t talk to anyone without crying. I didn’t have any information or answers to give anyone. We were all in the dark. Then the doctor called about a week and a half later and confirmed that Juliette had Down syndrome.”

Stephanie had so many questions about the struggles ahead for her daughter. What kind of life would she lead? How would people treat her? What would her health be like? How long would she live? Unfortunately, the doctor didn’t have many answers.

“But,” she said. “I’m a researcher and I knew the only way to get over my fear was to learn as much as I could.”  So she began where everyone does - on the internet.

A Stranger Becomes a Turning Point

She reached out to the Down Syndrome Association of Jacksonville (DSAJ) and other local organizations dedicated to Down syndrome. Everyone was welcoming and gave her so much encouraging information that she started to feel better. Soon, she felt brave enough to attend a fund-raising event and brought Juliette.

“It was our first outing as a family and I was a little bit nervous,” recalled Stephanie. “But then this little girl with Down syndrome walked in. She was so beautiful, bubbly and happy and had the biggest smile on her face. I saw how happy and full of life she was, and I was able to look at her and think about Juliette being just like her. It made me feel like she’s going to be ok. We’re going to have struggles, we’re going to have to go through things that might be different than others, but we’ll get through them. That was a turning point for me. Now, we’ve joined this amazing community of people, of families that have kids with Down syndrome that have embraced us completely.”

Before having Juliette, Stephanie said she knew her life was missing something.

“I have had a fabulous life. I have an amazing family. I have a wonderful son who lights up my world. But I still felt like there was something missing. I felt that God had a greater purpose and a greater calling for me - I just hadn’t found it yet. But with Juliette and this community, I have a new energy and passion around embracing her world, and her new friends’ world and doing everything I can to make their lives wonderful and successful by providing awareness and giving them opportunities to succeed.”

She’s been helping where she can with the local organizations, but then she saw something on Facebook and knew it was her opportunity._JMilesPhotography

How Coffee Could Start Something Big

“There’s a coffee shop in Wilmington, N.C., that is owned by a couple who have two children with Down syndrome. They opened the shop because they wanted to give their kids an opportunity to work and to plan for their future. They’ve done so well that the company recently put out a call to expand to other areas and were looking for suggestions. Stephanie hit the ground running.

In just two weeks she worked to produce videos featuring kids, teens and adults from the North Florida School of Special Education, the DSAJ and the The Arc Jacksonville sharing why the coffee shop should come to Jacksonville. She’s also talking to the Jacksonville Chamber of Commerce (thanks to Darnell Smith, North Florida Market President) to talk about bringing this and other businesses that support special needs to the area.

“I want to build opportunities for all kids with disabilities, not just Juliette,” said Stephanie. “If we get one business here, more will come. This is my passion - I want to be more engaged in Down syndrome committees, whether it’s raising funds, helping a business that comes to Jacksonville, or who knows, maybe Juliette and I will run a business together!”

Stephanie smiles when she thinks about how Juliette’s diagnosis began in fear and has blossomed into joy and peace.

“At first I was so scared,” she said. “I didn’t understand why this would happen. Now I look at it as the greatest blessing, the best opportunity to be a light - not only in the world of Down syndrome, but in the world of people with intellectual and developmental disabilities where people want to be loved, want to be included, want to grow and be like everyone else. Juliette has changed my life. She is my peace. I’m a better person because of her.”

Filed under: Healthy Living  

Karen Thompson

Karen Thompson is a Communications Consultant for Florida Blue. When she’s not working, she enjoys spending time with her two rescued pit bulls and hanging out with her friends and family. You can follow her on Twitter at @ktmarieFL.

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