Staring with Style

For tips in Staring with Style scroll down to the italicized section (if you want to skip my ramblings)…. J

Stares come in several shades and on a typical day staring is just part of our normal. And I guess somewhere along the way I did learn to ignore it in most circumstances. Ivey is intriguing. However, the physical features of Ivey that I see as beautiful and subtle reminders of her strength – others see as oddities and markers of weakness. It didn't take long to recognize that Ivey draws attention to herself whenever we are in public. And 99.999% of the time I'm am okay with the stares. I'll admit it still stings a little. But the stinging is now a comfortably numb feeling. It is part of who I am – they stare because of who she is and she is half me.

I have thought about this for the past couple of days – and I have decided that there are just too many types of stares and not enough words to explain how they can make a parent feel on the inside, no matter how well intended the stare is. However I distinctly remember the day that Matt and I decided there had to be a plan – a configuration of words – to explain our daughter to the public. This was our day- the exact moment we knew we needed a plan: click here to read.  Our attitude would mold everyone else. Our posture, how we hold our eyes, if we can smile. All of those things make us approachable – Ivey a person – not an object to stare at. Don't forget – we live in a society that bases everything on outward appearance – first impressions – I can only imagine what others conclude from Ivey's physical features.

So aside from the little glimpse of me being frustrated at a newspaper column – here in daily life – stares are handled much much differently. They are encouraged and accepted as long as they are in good faith. For the record, I LOVE it when someone does walk up to us to speak – ask questions, especially children, they are her peers.

It is easy to label stares into two columns – good stares and bad stares. I distinctly know the 'good' from the 'bad'. However, there is a third stare, but we'll talk about that later.

The good stares we encourage. It gives me a door to introduce Ivey to a new person. And I do that almost daily with every chance I get. I want people to know Ivey and how wonderful she is. I want to teach others to describe her scars and differences as unique attributes rather than deformities.

I want people to see her as the miracle – not a tragedy.

The bad stares I normally ignore. But I don't agree that it is okay that people are merely curious and that somehow condenses a discourteous behavior. What you might not consider because most people can't picture themselves doing this, is the facial expression that extends from the stare, and what it says; the look that says she is grotesque, ugly, weird –some days it becomes too much. The worst part though is how the person chooses to finally look away. Yes, this really does happen. And much to my humanness – some days enough is enough. I have learned the best medicine is simply to stare back.

Ivey never escapes this – ever, the good or the bad. And maybe the real issue doesn't involve Ivey directly at all, she is unaware (or so it seems). Maybe the real issue lies with those who surround her, who love her and all of us who endure these stares with her, knowingly – every day – day in – day out.

I did tell you there is a third stare.

It seems to be the exception to all rules – admittedly even I do this. It is a relief to meet this gaze on the hard days. The 'me too' stare. I have yet to meet a parent of a special needs child/even the parents whose children are now adults, that don't have this look. It's a look that comes only from experience. It is a look of Empathy. No remorse, pity, sorrow, sadness, confusion or curiosity extends from it. – Only admiration for the other child -

The article was something that got my goat following a couple of sleepless nights in a hospital, more talk with doctors about things awry with my girl, the confirmation of another surgery, things that never make print here on this blog. So I guess you got to see me take out some frustration on an unsuspecting article with an author who has no idea she became my punching bag. I guess I saw the mom reaching out for advice and – I saw myself in this mom – just wanting someone to take the reins for once and tell her what to do– to not have to think through a difficult moment anymore - there are so many other pressing issues that need attention.

Now I don't think I would personally ask Dear Abby, but maybe the mom had no one else. And the best DA could do was to tell her to ignore the insensitive (not the good) stares. She needed more. Obviously, Dear Abby hasn't hung out in a mall or on a playground with a child who looks 'different'. It will make the most confident people doubt themselves at times – you feel subconscious – you want to distract – deflect. And then you feel guilty and weak for being bothered at the way someone looks at you. Silly I suppose.

But for all those times, the good happens more often –

Last year I went to the boys' school to eat lunch with them only to notice a student staring intently at Ivey. I ignored it….and then watched in silent admiration as another student who knows Ivey, get up and walk over to the girl staring and start explaining that Ivey couldn't see her; she would have to speak to Ivey and touch her on the arm to let her know she was there. I never said a word, nor let on that I noticed – it wasn't my moment. But it was an extraordinary moment on so many levels. Ivey is loved by so many.
Those two girls went on to play with Ivey for the remainder of lunch....

(Of course I called the mom to let her know how courageous her daughter was in front of her peers in the school cafeteria.)

Well, that's only a glimmer into a small part of Ivey's life and how not all days are easy - no matter how much time passes - some things still are hard to ignore.

So here it is... a little do/don't do list if you were wondering what to do -

Staring with Style Don't's:

So yes, if you feel the overwhelming desire to stare, please stare with some style. A little splash of class would be nice too. Look in the mirror tonight and practice your 'I am going to look at special needs person' stare. Make sure not to pull your eyebrows too high, and don't squish them together too much either. Don't stand with your mouth open. Don't point. And for heaven's sake, don't have the "that's gross" look (our people tend to drool, make strange sounds, have tubes going all over the place, in Ivey's case you are apt to see her remove her prosthetic eyes and hearing aids, or lately she has learned to disconnect her feeding from the extension, etc). Once you look – never try to casually pretend our special people don't exist – they do.

Above all remember the Golden Rule – love thy neighbor as thy love thyself!!

And if that doesn't work remember what your momma said, "Treat others like you want to be treated"! J

 Staring with Style Do's:

Speak to people with special needs just like you would anyone else. Find something around them or what they are wearing to comment on – give them a compliment. Smile!! Ivey hears your smile in your voice! Look them in the eye. God knew what he was doing when he blessed Ivey with a head full of curly blond hair. Tell her how pretty her hair is….and the best thing about those curls…. People are lured to touch those curls (Purell your hands) …go ahead fluff her curls. But if you really want to talk to Ivey ask her to play 'Peek-A-Boo' or 'Pat-A-Cake' (and be ready to play it several times)

If you want to know something – ask! No question is too hard.

And foremost – always speak to the siblings – they are the people who take the brunt of it all.

But please, whatever you do, don't just stand there and stare… J