About a year ago, I was rushing through the church doors to Amazing Grace School of Performing Arts performance of The Lion King. Tyler was parking the car with 4-month- old Everett, 2 ½ year old Nora on my hip and I ran into Becky Dean, the director of the show – which was about to begin – she gave us the biggest smile, then said to Nora, “let’s get you up there too!”
I said “Yes, she would love that!”
Tyler held Nora through the performance. She sat up tall, engaged with her body, her eyes never left the stage. She was captivated – drawn to the energy, movement and rhythm of the performance. Nora has always loved music, being with her peers, and connecting with others: dance seemed like it might be the perfect integration of all of these things.
Tyler and I each had our own hesitations; Tyler knew Nora would need additional support to participate in a dance class. He didn’t want Nora’s needs to take away from anyone else’s experience.
I was struggling in a different way, wrestling with my concerns of the perceptions of others. As Nora’s Mom, I am always prepared to fight for my girl, to advocate for her best physical, social and emotional wellness. But as I considered the decision to let her dance, I realized one of the biggest battles I faced was the battle within my own soul. Using Nora’s chair outside our home and eventually on stage, meant we were shining a spotlight on her need for support for everything – including her her ability to move her arms and legs. I would need to let the world see her fragility, her vulnerability. My vulnerability.
A dance class would also mean accepting and welcoming adaptive equipment into our life outside our home, something new for us, and new to our community. When I talked to my momma friends about my insecurities, it boiled down to a conversation about confidence. Dance class was not just an opportunity for Nora to connect with peers, music and movement, but it was also an opportunity for her to develop confidence in her abilities, in who she was and is, with the chair or without it. The decision to dance, was also the decision to welcome the chair as a foundation for beauty, confidence and possibility.
I connected with Becky and again told her yes. I trusted Becky; I knew she was excited to have Nora in the 3-year-old class. And, I knew she would find the best fit for Nora and Nora would tell us, show us, if this wasn’t the right time.
I won’t pretend the first class wasn’t every single emotion wrapped up into 45 minutes. It started with my complete and utter discomfort as I wheeled Nora’s chair into the room. It looked out of place and clinical, sitting behind the circle of tutus and ponytails. Then there was joy as 10-year-old Grace – Becky’s daughter and class helper – ran up to Nora and greeted her and Nora smiled. Then there was peace as Becky led the class and Grace intuitively supported Nora through stretches and warm ups. Finally, there were tears of healing as Grace helped raise Nora’s arms above her head. Nora sat tall, alert, engaged. Nora locked eyes with Grace, and they danced with the class to Tangled (At Last I’ve Seen the Light). They were a team from the start.
After a year of hospitalizations, surgery, constant seizures, I was watching Nora be a kid. Just another kid in ruffles and a pony tail. I was watching her learn. Enjoy. Connect. I was watching her have fun.
I often think about this moment of healing. I think somehow it was what I was fighting for all along. All the treatments, surgery, conversations with palliative care were a fight for this: Nora’s bright eyes, hands held high by another dancer, twirling to Tangled.
Nora dances once a week in Becky’s class. She’s physically stronger, and her communication with and connections to her classmates have grown. Becky will tell you that Nora being in class means all the students are more attentive and team orientated. Most of all, Nora’s confidence in her own abilities is growing.
Because one beautiful woman looked at my daughter and said “let’s get you up there too!” my little girl gets to be a ballerina, too. The decision to dance was each of us trusting Nora, and each of the other dancers, enough to say yes, then taking the next step and following Nora’s lead.
Photo credit: Jessica Rice Photography