Ella’s sister, Ava, plays the violin and sings in the school choir. She practices her violin at home almost every day. Henry, their brother, plays the piano and practices as well. In fact, he has a piano in his bedroom and plays while we’re getting ready for bed.
Ella is finishing up third grade. This when the school district’s music program allows kids to join band or orchestra. The department travels to each elementary school, introduces the wide variety of instruments available to learn, and has all the students try out an instrument or two to see if they’d like to begin playing.
Ella was, of course, included in the tryouts, but soon realized that playing an instrument would present too much of a challenge for her. She doesn’t have the dexterity or strength to play a stringed instrument, and her lung capacity wouldn’t provide adequate support for a brass or woodwind instrument.
After all the tryouts and fittings were complete, Ella felt down. She wanted so badly to do something extracurricular, just like her friends and siblings. She would tool around the house and play her recorder from music class, but that didn’t seem to satisfy her need for inclusion.
Naperville, Illinois, is a big place, and we knew there had to be something that Ella could do outside school besides therapy. We searched for a bit and found the Young Naperville Singers (YNS). In order to join, however, she would have to try out. When we found the YNS, we told Ella that this was something she could do and do well. She always likes to sing, and often does so when coloring, making slime, or working on any kind of project.
Ella was nervous for the audition. For weeks and days beforehand, she would try out different ways of singing, trying to get her breathing correct, as well as finding the right pitch. She practiced at the kitchen table, on the swing and, of course, in the bathtub.
Finally, the audition day arrived. Her mother, Lindsay, had been given clearance from the doctor to resume driving (after having her lower right leg amputated), so she was the one to take Ella to the audition.
While they were gone, I waited patiently for them to come home or for some news via text. I was sitting in the family room when I heard the garage door open, and in came Ella. She had a great big smile on her face and was so excited to tell me about the audition. She had sung in a group first, then did a solo. She said she felt good about the audition.
I asked Lindsay how Ella did, and she said that parents weren’t able to be in the audition room … so we had to wait to hear the final results.
One day passed, and then we got word that Ella made the YNS! Not only did she make it, she made the “high” group! Ella was so excited to hear the news that she has been singing everywhere she goes!
Sometimes, life throws us curveballs and we have to patient and watchful for opportunities to arise. While SMA can hinder some activities, it doesn’t stop Ella from living her life. We wish her all the best as she embarks on this new singing adventure.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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