I can remember when Elijah was a baby how much Tim and I stumbled over the words to describe it. People looked to us to know the right way to say things and we were just as clueless. We spent so long trying to come up with the right paragraph to answer when someone would say "What's wrong with his hands?" What we wanted to say is: "Nothing is wrong with his hands, what's wrong with your manners?"
Of course, we knew that it was just a way of asking us why our son looked different than others.
It took years of struggling through explaining something that was so personal to us, so sensitive. You could also see it in people's eyes when they would ask. They could see how hard it was for us to find the right words. We've watched as our families have tried to "say the right thing" and as our friends have struggled through it. We've heard words that make us embarrassed and words that make us angry.
I think it's hard to be in this kind of position. On one hand, you want to educate, you want people to know how to address it. On the other hand, you don't want to be that lady that gets up on her soapbox if you look at her wrong. You want people to treat you normally; to not stare at you when you're eating dinner at a restaurant. And you certainly don't want people to avoid you like a plague because they are afraid of offending you. I think sometimes there are people in this world who lack tact and ruin it for the rest of us but for the most part, we're not going to come out and attack you because you don't know the correct terminology.
This summer both of my boys were in a swim class together. I spent every day for two weeks sitting on a bench next to 2 other moms cheering on their kids. Each day they would ask me questions about my boys, getting to know them better. They would remark about how good of a swimmer each one was, or how similar they looked. They asked me about life with two boys, about what school they went to and if I liked it. Not once in 2 weeks did they ever ask about Elijah's hand difference. It's not that I would have minded if they did, in fact each morning as I took my seat on the bench I was waiting for it. But it never came. I loved that they saw me for me; my son for who he was.
Because the truth is, we're just like everybody else, we just do things a little bit differently.
So how do you say the right thing when there's no right way to say it?
Here are the things we say about our son. "He has a hand difference" "He has 2 lucky fins". You can give him a high five, you can give him a thumbs up. You can point to things with your pointer finger. Just don't mind us, we will point with our pinky fingers most times.
What does Elijah think of all this? Well, he will be the first one to tell you "I have four fingers". That's his simple, easy, non-politically correct terminology and it suits him just fine. When asked the "why" question, his favored line is "Because that's just the way God made me."
It's never an easy thing to talk about, let alone blog about to the entire world. But I think it's important for people to know. And, as G.I. Joe put it, knowing is half the battle.
1 comment:
I love how you say this Erin...its from the heart...i understand since i have an aspergers son and he looks "normal" but then people kind of look at you when he speaks...sounds like a professor has trouble with eye contact but i LOVE his sweet heart and his spirit...he is such a special person, he is an original and he is my warrior...
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