Ok, I need to vent once again. I want to go out in public just once without someone stopping me to say,"Wow, he's got really white hair, huh?" One of these days I'm going to lose it and make a snotty remark back.....the possibilities are endless. But honestly, can't people just think these things inside their heads and keep walking?
The other day I saw a little girl with an enormous amount of curly hair - you could spot her from a mile away. I noted it silently, smiled and passed by. I did not feel the need to stop the family in the middle of what they were doing and point out the obvious.
I shouldn't complain, though, because at least these people are not as bad as the ones who stop and have a thirty minute conversation with me about it. I do want to educate people and give them real information about the condition rather than have them whispering behind our backs, but there are appropriate times for that conversation. Interrupting us as we're trying to eat lunch in a restaurant or stopping me while I'm trying to walk around an extremely restless toddler are NOT appropriate moments! I can't count how many times I've been literally wrestling with a squealing, writhing Emerson while someone yacks on and on about their neighbor's cousin's bestfriend who had blond hair and wore glasses because maybe THEY had albinism too and just didn't know it. I don't know either and frankly I don't care!
So I guess what I'm saying is that if you see someone who looks unusual, please resist the urge to comment unless you are 1) able to offer them real information or advice because you know about it firsthand or 2 ) trapped in an elevator with them for hours and honestly need to make small talk.
If you're wondering what all those pithy comments are that I should be saying but don't (yet), here is a great article from Lyra's mom: