Wednesday, August 3, 2011

Lunch with Sophie and a Business Idea

Huevo Estrellado

Sophie and I walked up to the big outdoor mall in our neighborhood, bought some tee-shirts for her at Nordstrom, went to the bookstore to buy a copy of The Boy in the Moon for The Husband and ate lunch at a little Spanish tapas bar. We had Tortilla Espanola (Spanish omelet with potatoes and onion) and Huevo Estrellado (two eggs fried with jamon serrano on top of french fries). We then walked back through the mall and home.  There's a certain bravado one must fake when making one's way through crowds with a handicapped child. I keep a pleasant smile on my face and hope that my eyes express a variety of thoughts, according to the facial expressions of those who are staring. For the clearly uncomfortable but probably perfectly nice there's my don't worry, we're actually fine living like this and yes, you should be glad that your daughter did not begin seizing when she was three months old for no apparent reason look. For the quick look and then averted gaze with a concomitant trot around us, there's my yes, yes, run, run as fast as you can, I won't catch you, little gingerbread man look. For the soulful stare there's my she is beautiful, isn't she, and thank you for noticing look. For the outright rude stare that goes on entirely too long, especially given that the starer is an adolescent girl who should know better, there's my you know what, you little bitch? You're actually as awkward looking if not more so than she is completely unapologetically and uncharitable stare-you-right-down look.

I did have what I think is a brilliant idea, though -- a discreet camera tucked onto Sophie's person somewhere to record the various faces and stares. It could be called The Handicapped Stare Steadi-Cam.

22 comments:

  1. Yes. And this posting belongs in your book.

    We still talk about the "head tilt" and "cancer face" that we frequently encountered in the grocery store, mostly after Katie's passing. Tedious sympathy, mixed with fear and "Thank goodness it's not me!" expressions.

    Lots of folks stared at Katie when she lost her hair, and after she got her NG tube, and it infuriated her...the irony is that she never stopped staring at others, no matter how much it bothered her when people stared at her. I guess we are all naturally curious, and sort of awkward, too. I sure am - I love people-watching - though I do try not to stare, and I don't tilt my head or make the cancer-face!

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  2. I agree this is book worthy!

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  3. I think the Steadi-Cam is a great idea.
    Also- I want that lunch.

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  4. Best idea, ever. Can I add the "I said hello to the kid in the wheelchair, but it turns out she's way more disabled than I thought, now I'm engaged and have no friggin idea what to do or say" look? We get that one a lot.

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  5. I could go on and on about "the stare" and maybe, someday, I will. For now I'll just say that about ten years ago, I was walking around on our town square when I ran into a mother pushing a double stroller. In one side was a beautiful curly haired six month old. In the other side was a beautiful curly haired four year old. While staring at their beauty, I realized that something was different about the older child. Rather than stop starring, I engaged her in conversation--well, I did all the talking. That encounter led me to three delightful years of joining a "team" that spent two mornings a week with the little girl doing patterning. Elizabeth was born with cerebral palsy. She brought joy to her family and all who knew her. She died at the age of seven. I've never regretted the opportunity to stare at her and share her short life. I do have many more staring stories. Later.

    Best,
    Bonnie

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  6. Regarding your book purchase--let me know what your husband thinks of The Boy in the Moon. I read it over Memorial Day weekend and loved it. I blogged just a little about it, but need to find the time to express what I felt about it in more detail. I don't know anyone else who has read it, so I'd love to hear what you/your man think of it!

    As for the staring, I think the hidden camera idea is priceless!!

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  7. Sweet Vicki is the one that shared the gingerbread story with me, shared with her in the early NICU days. I JUST passed it along to a FB friend whose little guy started IS 6 months back.He also has Down syndrome.She was just processing the "rocks, the wanna be's and the gingerbread men" in her life.

    I was at the Getty yesterday and well, the looks were of all varieties. The best came though when a docent was staring at me and then asked me where I got my darling "stroller". We proceed to talk for 15 minutes on the beauty of Zoey and children like her. In my day filled with stares and the cringing feeling I had when the tram worker announced louder than you could possible imagine to a huge group "People, when the tram stops please allow this woman with her daughter in the wheelchair, to enter first.", that docent made it all worth it.

    Love the business idea. What a documentary we could produce if we attached one to all of our childrens rides, over the course of time.

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  8. Yes, this should be in your book, but now you also have a documentary to do! Your experience and ability to articulate it is a perspective most people don't have and so remain woefully ignorant. In all seriousness, the hidden cam could be an amazing documentary! I could see Oliver working with you on it, too.

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  9. I've thought about that as well. I'm usually too busy with Katie to notice anything around me but I would like to see people's expression, just so that I could give them hell.

    Want to hear something funny? Katie stares something awful at other handicapped people. I just shake my head.

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  10. I would have loved you as a shopping buddy when Erin - bald and limping from the metal rod that replaced her femur - and I were out. I used to do a really good "bite me, you adolescent bitch" look too!

    Book-worthy post? Hands down yes!

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  11. Love this post. The damn looks from people - they should definitely be documented, and The Handicapped Stare Steadi-Cam is the perfect idea for doing it.

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  12. Elizabeth, this touched me in my heart. Let them stare, some are rude, cruel and not worth your time. Others, I think, are awkward and don't know how to be. It takes something to know, and not everyone has this something. They wish they did, but they don't. And sometimes it is hidden behind a stupid, rude adolescent face that will, hopefully, grow up to be someone who regrets and grows up.

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  13. Until you have the financing for the steady-cam and documentary---definitely worth doing---make Valentine an official-looking service dog vest and teach her (him?) to walk right next to Sophie's chair. Works wonders. Besides her dog, Miel used to favor wearing a large, extremely realistic-looking rubber snake around her neck. That confused the gawkers! Total cognitive dissonance.

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  14. Love the idea...but how would you get anyone to sign the release?

    (I know, I always pee in the corn flakes, but somebody has to.)

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  15. I, too, do the la-la-la happy walk, very AWARE that we should appear happy and carefree. But something about teenage girls... they just seem ruthless. I'm sure only a small fraction will be the mean girls of lore, but I (maybe unfairly??) assume they're all guilty by association.

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  16. Know what teenage girls need? They need a mom nearby to whisper in their ear, to explain, to model social kindness, to make them less afraid of people that appear different. Today's staring teen could very well be tomorrow's teacher, or doctor, or caretaker.

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  17. This brings back memories of outings with my sister, Marla, and with others in my life who got the staring treatment. Thank you for putting words to this experience so brilliantly. Also, thanks for that breakfast glam shot AND I voted. Of course you should win. No question.

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  18. love this, know the stares and the bravado well

    but you have to be willing to have the tape playing in your head be aired to explain subtle differences.

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  19. love the stare stedi-cam idea!! :) you crack me up...

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  20. My yoga instructor once announced that he wanted to put a camera in the room to record all of our faces as we do various difficult poses. It made us all so much more aware of how much tension we were holding there that I can't not think of it now when I practice yoga. I'm sure the camera would illuminate (if not educate).

    Your lunch looks fabulous! Hope you enjoyed eating it as much as I enjoyed looking at it.

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  21. That was perfect. I loved esp the gnigerbread man line.

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