for Stephanie Ramos and Danieal Kelly
How many times do we hear from someone, "What's wrong with her?" Or how about, "What's her diagnosis?"
Children are often the most curious and concerned. Often times they are guided away by an adult saying in a hushed tone, "she's different" or "don't stare, that's rude." One time, a woman gave me "Miracle" water from Lourdes to heal her. It worked, too, because our survival is miracle.
The majority of the time, the encounters are somewhat pleasant driven by the best intentions. Many are just naturally curious because they have a family or friend who "looks"or "acts" just like Elisabeth. Sometimes they ask about her syndrome. In most cases, it's really the only time people acknowledge our child's presence.
Elisabeth is absolutely beautiful. She presents at a much younger age. So what do we do when we see the most beautiful person in the world? Don't we usually acknowledge their presence with a greeting or smile?
With Elisabeth, I want people to ask her, to speak directly to her: I love your hairstyle! I love those boots!
I love those flashy lights on your wheelchair!
Let's face it, life is too short to talk about diagnosis or therapy. I'd rather talk about the 45 minutes it took putting nail polish on her nails so they match her top. Or, the 1 hour it took to fix her hair so it looks just like that actress from "Jane Austen's Book Club." Elisabeth loves the Bennet Sisters. Let's talk about Jane!
When I run into anyone curious, I generally pretend I don't hear their question. Instead, I tell them her name and hope they'll come up to her directly saying, "Hello! Elisabeth! Where did you get those cool wheels on your chair?" or "I love that hair style. You look just like that actress in Jane Austen Book Club."
Once in awhile, this guy from church comes up to our daughter, and kneels down to make eye contact with her. He says directly to her, "You're really jazzing me out girl. Where did you get that outfit?" to which our daughter responds by flashing her eyes and smiling that million dollar smile that only Leonardo DaVinci knew how to capture.
We don't know anything about Mona, do we? Sure, she's somebody's daughter, wife, or friend but why is she famous? Because somebody, maybe even Leonardo, took the time to make her smile.