Do You Sing With Your Heart?
My daughter Leila happened to have Down syndrome, a genetic condition involving a third copy of the 21st chromosome. A genetic accident or mistake, one might 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 people with Down syndrome have Alzheimer’s-like lesions in the brain. That doesn’t necessarily mean everyone 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 the school choir (the choir teacher put her between two strong singers so her off-pitch singing wasn’t heard), Sunday School choir, and at synagogue. She even went on a trip to sing with another synagogue, traveling from Phoenix to California. I went along as another chaperone. She sang at camp and on cruises we took, doing karaoke.
One memorable moment was when she won a karaoke contest on a cruise, taking home a bottle of wine, which took me two years to use up in cooking. People remember her singing. We even did Facebook Lives doing karaoke, spreading her joy of singing to friends and family.
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 as perfect.
The title of this article popped into my head when I started writing it. Evidently, I was writing in Adonai’s time. Leila doesn’t sing much recently. Alzheimer’s had shrunk her brain and robbed her of the music.
At least she remembered who I am, was always glad to see me, and still gave Olympic-worthy hugs.
Leila passed away about two weeks ago. Her singing, however, left an indelible mark on everyone who heard her. She sang with her heart, and that’s all that ever mattered.
To those who are told not to sing, or who feel embarrassed about singing off-key — remember Leila. She sang with joy and without inhibition. She participated in choirs, performed at her Bat Mitzvah, sang on trips, at camps, and during karaoke on cruises. Her voice may not have always hit the right notes, but it always hit the right spot in our hearts.
Singing isn’t about perfection; it’s about expression. So, sing with your heart, and let your voice be heard. Leila did, and she taught us all a beautiful lesson in the process.
