A Winter Concert Triggered Painful Emotions
In 2019, my two daughters, who are two years apart, attended different schools. My neurotypical daughter Ryan’s school had a winter concert, where all grades sang songs prepared during music classes. My older daughter, Cammy, who has Rett syndrome, did not have a winter show at her school.
At Ryan’s concert, we had accessible front-row seats reserved for our family. Cammy watched and listened intently as Ryan and her third grade class performed a couple songs. She began to flutter her eyes with annoyance during the fourth grade songs. Then, she completely tuned out the fifth grade by closing her eyes and falling asleep.
I didn’t think much of it. I thought she was experiencing sensory overload due to the crowded auditorium and singing children. Cammy woke up as we put her coat on to leave. When we wheeled her into the van, she perked up. She smiled at Ryan to indicate she was proud of her.
As I tucked Cammy into bed that evening, she was teary-eyed. I turned the lights back on, and asked if she was all right. The floodgates opened. I don’t know if the high pain tolerance that comes with Rett syndrome includes emotional pain, but Cammy rarely cries. At 9 years old, she had only cried a handful of times since she was a baby. It was gut-wrenching to see her lying so still, unable to verbalize her pain and sadness.
I went through the normal checklist: “Does something hurt? Do you feel sick? Did someone say or do something to you?” Nothing. Ryan walked in to check on Cammy, and it dawned on me.
“Are you sad because you can’t sing in a concert?”
Cammy’s eyes met mine. I began crying, too. Then, Ryan began crying. My husband walked in to see the ladies of the house hugging as we sobbed. (It was his first glimpse of the hormonal teenage years to come.) I explained why we were all upset. The look in his eyes matched the feeling in my heart — helplessness and sorrow.
We felt like we’d been punched in the gut. It was the first time Cammy had expressed sadness about being unable to do what everyone else could do. There was nothing we could do to make it better besides lie with her, wrapping her in our hugs so she felt all our love and support.
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Jill Johnson
Dear Jackie,
That was so sad. I guess you will be onto Cammy;s school next year to put on some sort of performance - perhaps inviting siblings to join in. I'm afraid we have to be pro-active for our girls. Cammy's teachers need to put themselves in Cammy's shoes. It's a life long job - my daughter is 55 !
Regarding the assumption that our girls don't feel pain just because they can't say Ouch! is not always true. My daughter long ago told me "pain felt very strongly"