Monday, April 5, 2010

Skipping along and getting hit by a bus.

Yeah, I have been skipping along lately. My deep thoughts have had little to do with fears and more to do with a fundraiser I am trying to put together. I have been making phone calls, and attempting to get interviews.
We have also been spending lots of time outside. Sliding, swinging, hanging diapers on the line, and playing with sidewalk chalk have been filling my days. I feel like we have snapped out of the hellish winter full of sickness, doctors visits, and test to a beautiful spring morning with the birds chirping, and some nice light music playing.
And then I got hit by the bus. It was while we were on a walk. We are making the rounds in our neighborhood, smiling, waving, and stopping to say hello. Our friends who live up the street were getting out of their car. They are around the age of Abigail's grandparents, and always like to talk to her. So we stopped. They jokingly asked when we would be in the paper again. I told them that the paper was going to do a story on Abigail.
As the conversation continued the woman asked what Abigail had. I told her what it was and she said "my nephew has that." I almost fell over because I never meet people who know what it even is. If she had stopped with that statement I probably would've gone on in my world of happiness, skipping, and singing birds. She didn't though.
She looked up and (paraphrased) said, she looks normal. You can't even tell she has anything wrong with her. My nephew is really disfigured, and isn't very smart. At least she is smart.
Ugh. And thank you for running over me with your huge bus. First of all, I don't know why everyone seem to think that people with special needs all look a certain way. Like God put some sort of stamp on their face so you can just look at them and know they are "special." Every time I am somewhere and I mention that she has a disorder the response is always about how she looks normal.
Secondly, IF your nephew has NF, and you know anything about it, you should know that it's considered progressive. Just because she doesn't have any telltale signs DOES NOT mean that she won't. And the smart comment...well yes Abigail is very intelligent. However, that has nothing to do with whether or not she may have a learning disability. Only time will let us if she learns differently, or struggles in a specific area.
The woman was not being rude. I didn't think she was being rude. Sometimes though, I like living a happy life, feeling "normal," and getting through a day, or week, not thinking about how we have no idea what life will be like down the road. I want to just be able to skip. I'm tired of these stupid buses.

1 comment:

  1. Oh you are so not alone! I can't even tell you how many times I've told people that Jake has Down Syndrome and their response is, "Oh well he's cute anyway"! It's not stupidity, it's lack of knowledge. Well, it might be a little bit of stupidity too. I feel like it's our job as parents of our special little people to inform people when they say uneducated things like that. Not in a angery way, but in a matter of fact kind of way. If not for yourself, for the next person that they have a conversation to! It's our job to stop those silly busses! ;) Hope your day gets better!