Stepping into brave: Sarah’s story

We don’t get to choose the moments that change our lives. But if we’re brave, we let them make us stronger.

When Sarah Weaver was pregnant with her daughter Nora, she had no indication that one of her baby’s chromosomal proteins had shifted in the first weeks of development, causing a dysplasia. Only when Nora was born and placed on Sarah’s chest did she learn that her daughter had some differences in her fingers, eyes and facial features. Sarah assumed a doctor could “correct” the abnormalities and the family would be on their way. That was not how Nora’s story unfolded.

“Nora has endured close to 30 surgeries, with most of them being from birth to age 5,” says Sarah. “She used to cry when entering parking garages because she knew what that meant.”

Each surgery lasted between three and four hours, and twice Nora underwent emergency eye surgery for glaucoma, in addition to eye muscle surgery. The family breathed a sigh of relief for a year after those procedures, until an eye infection destroyed the interior of Nora’s right eye. More surgeries followed to try to save her eyesight, but at age three, Nora was diagnosed as blind in that eye. In her left eye, Nora has only 20/80 vision, and there is a chance that she will lose her sight completely one day.

From the start, Sarah knew she had to be fighter for Nora. And since those terrifying early days, Sarah has found a peace about Nora’s diagnosis, and drawn incredible strength from her daughter, who is now 14.

“How could I live in fear when my job was to give her wings to conquer her fears?” Sarah says. “I recall crying quietly in the shower when she was young, as the tears mixed with hot water streamed down my face. I prayed for strength to endure Nora’s journey with her. I got that strength and it was because of Nora. She bravely accepted who she was and her journey. She has never once complained about ‘Why me?’ She bravely steps into her life and lives it with a quiet confidence.”

For both Sarah and Nora, being strong means living with fear and many unknowns.

“I used to pray that she would not go blind, that somehow God will forever preserve what is left,” Sarah says. “However, that only caused fear. I had to accept it so that I could help Nora accept it, or at least be open to the possibility of it. We don’t dwell in the what-ifs, but we acknowledge them. We allowed ourselves to say it out loud, to feel the uneasy feelings in our chests and breathe in the unknown. We then set it aside and went on living with what is.”

That approach has included expanding the family. After Sarah and her then-husband came to terms with how rare Nora’s condition is — fewer than 300 people worldwide are diagnosed with it — they welcomed daughter Lila in 2009.

Sarah hoped Lila could be someone for Nora to lean on, but the sisters’ relationship has become much richer.

“Nora and Lila have a genuine bond,” Sarah says. “Lila relies on Nora for ways to navigate life. She looks to Nora for advice and support. She values Nora’s insight and experiences. Nora enjoys Lila’s free spirit and energy. Nora loves watching Lila navigate middle school. She has a genuine joy for Lila’s stories and experiences. I foster respect between them by teaching them the give and take of relationships.”

Sarah has worked to teach her daughters that their family is a team, even as it’s changed, such as when she and her husband divorced and, later, when each remarried. And she’s modeled for her girls what it means to be brave.

“I was brave when I became a mom and I haven’t stopped being brave ever since,” Sarah says. “Bravery is my armor, for I have no other choice. I was brave when I got divorced and had to tell our children how their lives would change. I was brave when I let their step-mom tuck them into bed. I was brave when I watched my children enter their new home without me there. It is never about who they love more. Love is free.”

Sarah has been courageous in her professional life as well, pushing through challenges to become a speech-language pathologist at a public elementary school in Michigan, as well as an adjunct instructor at Northern Michigan University. She is also a registered yoga instructor and teaches family yoga classes and yoga for athletes at the university level.

And because of her courageous and open spirit, Sarah helped plant the seed for what would become Fellow Flowers. She was one of the 14 women who agreed to run a half marathon together in 2011. Because Sarah shared her personal story in the weeks of training, she invited the others to do the same.

“I wanted to connect with the women because my why of wanting to run the race was to evolve, to breath in new directions and welcome in change,” she says. “I doubted my potential when I began training, yet over the course of training, I became powerful in my soul. I realized my self-worth and wanted to share Nora’s story, which was my story, too.”

The race was also an opportunity for Sarah to show Nora another way of being brave.

“I wanted to run so that Nora could physically see me reach for a goal and accomplish it,” she says. “I have since learned that it isn’t the finish line that it is as important for your children to see as it is the journey. They need to see you deep in the commitment that you made. They need to see you trudging on even when it is hard. They need to witness you feeling a multitude of emotions. They need to witness the journey of grit and determination which makes crossing that finish line so rewarding.”

When Fellow Flowers began developing its signature flowers, it was natural to choose Sarah and Nora as the inspiration for turquoise, the “Believe” flower.

“The turquoise flower means defying the odds, running your own race and not letting your challenges define you,” says Sarah. “Early on, I was determined to not let the diagnosis define Nora. It was part of her but it would not define her. We all have parts of ourselves that are less than ideal, but we have to learn to honor that while not letting them define us. We have that choice. Knowing Nora has inspired it is humbling. Nora exemplifies the soul of the turquoise flower. She may never run a race or cross a finish line in the most concrete definition, yet every day she runs her own race and crosses her own finish line.”

Nora is now a freshman in high school. She’s an artist and a writer and a dancer. A friend, daughter and sister. Funny, with a contagious sense of humor. Principled and conscientious. Courageous to the core.

“Nora is brave every damn day,” Sarah says. “I watch her walk into the high school with her shoulders back and head held high. I listen to her describe her classes and what she needs to succeed. I watch her advocate for herself and her potential. She is brave by getting up every day, accepting who she is and marching forward with joy in her heart.”

And Nora proves that while her story may start with a challenge, it certainly doesn’t end there.

“Nora’s story is filled with medical research papers that document the possible lifelong disabilities that may or may not result as she grows and develops,” Sarah says. “Research says she my go blind. Research says a lot, but it doesn’t say who she will become or who she at her core. It doesn’t say she will thrive despite the challenges. It doesn’t say she will inspire. It doesn’t say she will become a famous writer and use her gifts to light up the world. Nora means light and she continues to defy the odds. She continues to light up the world just by honoring who she is. Nora’s story is inspiring, and courageous, and I am grateful to be her mom.” 

– Katie Vaughn

Thank you, Sarah, for sharing your story with us. We’ll have more from Nora herself next week, so please stay tuned!