Sunday, January 8, 2012

I'm not sure I'll ever get used to it...the feeling that wherever we go people are looking at us.  I know, I sound incredibly "junior high", but come with me sometime and you'll see.  When we take Lilah anywhere in her wheelchair, the sea of people part and everyone does a double take...trying to figure out what's up with this sweet little girl in a wheelchair.  I can almost see the thoughts in their head, "oh. is she? well, maybe? i don't know. poor little thing."  Because while she doesn't look obviously disabled, she is starting to look less and less 'normal', if only because she doesn't engage with those around her.

I'm pretty sure it's not all in our minds, because we aren't sensitive about Lilah or her wheelchair.  I know people mean well, that their stares are curious and genuine, not at all judgmental...but it still makes us feel, well, watched.  And, somedays, I just want to fade in the background...not having strangers study my family's every move.

I am guilty of it too.  Months ago, when I was leaving the mall, I saw a young man in a chair and he was leaving alone.  I watched him head toward his truck and was so darn curious about how that was going to work that I couldn't quit staring.  I watched, like a stalker, eyeing this man's every move.  And, then I sat there in my car and wept, because, while he managed to get in his truck,  attach his chair to a lift, and swing it into the truck bed, it wasn't an easy deal...he'd had to work so hard to just get 'in his vehicle'.

Anyway, my point is, that's why people stare...they are curious.  And, it's not bad....I think it must be an encouragement to see such a little thing, usually with a smile on her face, trying to push herself around. (fyi, if you are a starer, please smile at my child).   And surely, they are a bit more thankful for so many things that they take for granted.  So, as with many other things along this journey, I'm just going to have to grow thicker skin, and not leave my house without my lipstick.:)


Amy Young said...

I think you are right about it being a curiosity issue and I believe that every person who gazes at her....also says a little prayer for her. That certainly is a good thing, right? I had the same issues when my son had a feeding tube and it drove me crazy, but as you said, I find myself doing the same thing to others. It is a fine line but some days it is easier to handle than others. Maybe it is because she is sooooo cute! Really, she looks like a doll!!! :)

Rachel said...

I haven't been on blogger much these days, but I sure do understand the feelings you have. Lucas has a walker and he is quite mobile with it. Which means he runs off into people, over their toes and squeals all the while. There is no indescrete way to do anything these days. I am beyond proud, but sometimes, I just want to fade into the background as well. But like you said, you'll never leave the house without lipstick. The stares will always be in your direction!

Garola Gang said...

I'm just so sorry this is your normal! BUT, attitude is everything, and yours is dead on! I love that you'll wear lipstick! When we were in the throws of treatment and we got the "oh, I think that poor little girl has cancer" stares, it did make me a little crazy! I really would have rather people asked. In fact, several times when it was kids that were starring, I'd offer it to them for Cora's sake saying something like, "she has a pretty neat hat doesn't she? She is taking some strong medicine to beat a sickness right now, and it made her hair fall out, but she's just a normal kid like you. Her hair's already growing back!" It was easier for me to do that than to feel the eyes, but harder to do with adults! You're very clever, you need to come up with a standard one liner that let's people know that they should just smile and speak OR go about their business! I think you and Lilah are doing GREAT!!! And she is totally PRECIOUS as are you!