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Do You Sing With Your Heart?
Singing in God’s Key
How My Daughter Who Doesn’t Sing on Key or Pitch — Really Does…
Leila happens to have Down syndrome, a genetic abnormality consisting of a third copy of the #21 chromosome. A genetic accident, or mistake, I would call it.
Furthermore, Leila’s specific chromosomal configuration is called 14–21 Translocation. What the heck is that!
It’s when a portion of the third #21 chromosome attaches to the top of a #14 chromosome.
And it doesn’t even have to be the whole chromosome — it can be just the tip, which, as I understand it, is where the Alzheimer’s gene is located.
By the way, I also learned early on that 100% of the people with Down syndrome have Alzheimer’s-like lesions in the brain. That doesn’t necessarily mean every one with D.S. will get the disease, but it’s a higher percentage than the general population.
Keep in mind, as with all diseases, something has to trigger it.
Anyway, Leila used to sing in school choir (the choir teacher put her between two strong singers so her off-pitch wasn’t heard), Sunday School choir, and at synagogue.
We spent a lot of time learning the songs and prayers for her Bat Mitzvah, which was in February 1994. Of course, she also sang at home. She actually sang before she talked. There was music therapy at her special needs preschool.
She never sang on key, as most of us would recognize. But she didn’t know that and no one ever told her.
I never cared whether she could hear the pitch. I was thrilled that she sang at all. It occurred to me at synagogue one day that the sound of her voice went up to Adonai (God) and came down perfect.
The title of this article popped into my head when I started writing this article. Evidently I was writing in Adonai’s time.
Leila doesn’t sing much, now. Alzheimer’s has shrunk her brain and robbed her of the music. This is for another article.
At least she remembers who I am, is always glad to see me, and still gives Olympic-worthy hugs.
