Family Medical Motherhood

The Decision to Dance

November 16, 2017

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

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25 Comments

  • Reply Jessica November 16, 2017 at 6:30 am

    You are inspiring and this made me tear up all over again. I’m so thankful you have invited me into your story and let me capture all of the beauty in it!

    • Reply Jesse November 17, 2017 at 3:27 am

      Thank you for sharing your incredible talent with us! We love you girl.

  • Reply eva montague November 16, 2017 at 1:47 pm

    I an so proud of you and Tyler having the courage to make Nora’s world bigger and her life richer by letting her take this dance class.

    • Reply Jesse November 17, 2017 at 4:40 am

      Thank you Eva for helping me find that courage from the start.

  • Reply Pam Serr November 16, 2017 at 2:55 pm

    What a beautiful and inspiring story! The photos capture the magic of the milestone so well!

    • Reply Jesse November 17, 2017 at 4:36 am

      Thank you Pam! Jessica did such a beautiful job capturing this special day. We can’t wait to share more!

  • Reply Stacy November 16, 2017 at 3:02 pm

    Jesse, that was beautifully written! Thank you for sharing and I’m so happy for you and Nora that she has the opportunity to dance. To be a kid and have fun!!! What a special place you have found!!!

    • Reply Jesse November 17, 2017 at 4:34 am

      Thank you Stacy!

  • Reply Cori Geving November 16, 2017 at 3:28 pm

    Jesse, Your open-hearted sharing is an inspiration to me to be vulnerable with my insecurities and my desire to fight for my girls and ultimately to trust God and others! Blessings on your beautiful family for all the moments.

    • Reply Jesse November 17, 2017 at 4:33 am

      Cori, YOU inspire ME. Thank you for walking this journey with all of us. We are so blessed by you and your family.

  • Reply Jo Ann Costanza November 16, 2017 at 4:01 pm

    Jessica and Tyler,

    When God created this enchanting little Angel named Nora, He knew He must find the perfect parents for her. He knew they would have to have an abundance of love for one another and for Nora. He knew they would have to be wiser, stronger and bolder than most parents, because these were all the gifts they would then instill in this beautiful child. Thank you for sharing your story. It is blended with inspiration and reality. Cousin, Jo Ann

    • Reply Jesse November 17, 2017 at 4:31 am

      Jo Ann! You are so sweet. Thank you always for your encouraging and kind words. I absolutely adore hearing from you.

      • Reply Joanie Brandt November 17, 2017 at 5:35 am

        I don’t know why but whenever I think of Everett, I write Everest……possibly because Joe had an Uncle Everest…..or I am just getting much older!! So sorry!

  • Reply Ernie Chavez November 16, 2017 at 4:22 pm

    Incredibly moving blog and I love the internal dialogue. Beautiful

    • Reply Jesse November 17, 2017 at 4:29 am

      Thank you! Your amazing wife helped bring this post to life. Love you both.

  • Reply Leanne November 16, 2017 at 4:30 pm

    Nora’s fragility, Grace’s love, and your vulnerability, Jesse, are absolutely beautiful, and a testimony to the grace of God. Thank you for sharing!

    • Reply Jesse November 17, 2017 at 4:26 am

      Leanne, thank you for these beautiful and encouraging words

  • Reply Jodi Jackson November 16, 2017 at 5:31 pm

    So so special…made me tear up! What a wonderful teacher and I just love how beautiful her life is! You and Tyler are amazing parents and God knew what he was doing when he gave you Nora and gave Nora you….💗

    • Reply Jesse November 17, 2017 at 4:22 am

      Jodi! Thank you for your kind words, we are so thankful for your encouragement!

  • Reply Jacci November 16, 2017 at 10:24 pm

    Everyone before me has said exactly what I might have said if I had responded first. I did not get to the recital but did see the video and it was so beautiful! Jesse and Tyler you have done a beautiful job with Nora. You are so blessed with one of God’s precious little angels!

    • Reply Jesse November 16, 2017 at 10:31 pm

      Hi Jacci! I think you are thinking of the Cinderella video performance from the Spring. We actually have a new video being released December 1st of just Nora and Grace performing a duet together! We are calling the project Grace and Nora’s world and we hope it will be the first of many videos to come! I can’t wait for you to see it.

  • Reply Joanie Brandt November 17, 2017 at 5:05 am

    Jesse and Tyler,
    Through the tears I write this to you. I am so very pleased to hear that Nora is dancing and is doing so well: learning to raise her arms up high and other physical movements, to relate closely with peers, to the reinforcement of her confidence, and most of all, moving with MUSIC. I am so eager to see the video in early December. You both are raising a beautiful family, and being a former neighbor of yours Tyler, I am proud of you and your lovely Jesse. Keep the deep faith you both have, and let God do His work through you, for Nora, and all who read these spirit filled blogs. Everest is a happy and delightful boy, and it’s wonderful he and Nora relate to each other. And I am so glad Nora has Tahoe too. Continued love and prayers to the four of you….Tahoe as well. You are truly blessed.

  • Reply Brittany Hagemann November 18, 2017 at 4:19 am

    How wonderful, Jesse! Beautiful story! I really love the photos. I feel that they capture your story perfectly. <3

  • Reply Becky Dean November 30, 2017 at 6:06 am

    It has been such a blessing and an honor to be on this journey with you. Nora continues to amaze and inspire! We are all called to use our talents for God’s glory and Nora is already hard at work at that. I’m overwhelmed with joy, love, and high hopes for all of my students. Nora is no exception. She is a hard worker. I’m so very proud to be her dance teacher.

  • Reply A Sacred Dance | Flourish San Diego December 14, 2017 at 7:03 am

    […] The Decision to Dance tells the story of how Nora became a part of the Amazing Grace School of Performing Arts. […]

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