“I don’t hide my heart, I wear it on me” — Lizzo, Special
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For most of us, communication is easy. We talk. People nod. Message sent and received.
Then there’s Stella Butler, 6.
“Stella Bella,” as she’s known at home and in her broader Variety Village family, cannot speak, or walk, or feed herself or use her hands much. Instead, she “talks” in her own way. Those who know her, understand her. You just have to learn “Stella Bella.”
Let’s start with her world-class stink eye. Her hairy eyeball. Her power glower.
It screams distain, disgust, displeasure, distaste. All the Ds.
She deploys it when her dad, Jeff, plays hard rock, for instance. Thus, Stella’s stink eye can mean, “Turn off that racket!” Lizzo, Dua Lipa and the Weeknd, on the other hand, elicit a knowing grin and something akin to bopping to the beat.
Tired, Stella? She rubs her eyes, puts her head down and cries.
Hungry? She puts her hands in her mouth.
When I meet Stella at the front door of Variety Village, her wheelchair propelled by mom Clara, the little girl’s blue eyes sparkle like Christmas baubles. The look says, “I’m in my happy place.”
“She lights up when she comes here,” says Clara.
Midway through our interview, Stella fidgets, grumbles and gazes about. Which means what?
“She’s bored,” says her mom. “She saying, ‘I’m done with this.’”
Ouch. I’ll try to ask more riveting questions.
So, you see, Stella says what she thinks, without words. Words such as Rett syndrome, a genetic hiccup that affects one in 10,000 kids, mostly girls, including Stella. She was diagnosed at age three. A U.S. lab found the telltale mutation on the X chromosome.
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