Please forgive me if you've already read this post on my blog. Normally I don't do this, but I received such a strong reaction to this post earlier in the week that I thought it would be worth repeating over here.
I was filling out a questionnairetoday; Connor has been selected for an award given out by the military hospital every year, and so we were to write a bit about him and send in some pictures to be used in the ceremony. Everything was going along swimmingly until I got to this question:
"Knowing that you are Mom and Dad, we would like to know from your perspective what makes your child special to you and your family."
And it was there that things screeched to a halt. I couldn't figure out how to answer this question, and I was surprised by my strong negative reaction to it. It's certainly a totally innocent query-- we were probably just supposed to list some of Connor's positive traits and move on. But it was that word "special" that was sticking in my craw.
While I say that Connor has special needs, as that seems to be the most PC term, and I love him deeply and fiercely, do I think of him as special? I might get a little flack for this one, but oh well.
No. No I don't.
He's not a saint or an angel or some sort of pillar of society. He's an ordinary little boy who happens to have a lot of challenges to deal with on a daily basis. While I know he's not ever going to be "ordinary" in the conventional sense-- he'll always be set apart by his physical and cognitive disabilities-- I really, really wish that wasn't the case. I wish that he could be viewed by the world outside our little family as simply a person, no better or worse than any other, and not as a case study or someone to be pitied or babied or scorned or idolized, depending on who's looking at him.
This is probably such a sticking point for me because we run into a whole lot of folks who tell Jeremy and me that we are special people for having Connor. And we're not. We're totally ordinary, normal parents who are muddling through raising a child and figuring it out as we go along, just like everyone else. I don't like being thought of as some sort of extraordinary person because it implies that only extraordinary people can raise children with disabilities. And that's not true; I firmly believe that anyone who would be a good parent to any child can be a good parent to a child with disabilities. To my mind, being special means being set apart. It implies an us and a them. And we don't want that, not for ourselves or for Connor.
It took me a long time to compose an answer-- I didn't want to turn Connor's award into my own oversensitive personal rant, and so it took me a while to figure out what I wanted to say. Tell me what you think about it. Here's what I ended up with:
"What a difficult question to answer! Certainly Connor is special from a medical perspective; he’s the only known case in the world with his specific genetic condition. But here’s the deal—despite the fact that his medical conditions permeate almost every aspect of our lives, we think of them as relatively unimportant. Connor has a variety of conditions that are part of him, just as he has blond hair and green eyes. They don’t define who he is.
"We could tell you about his bubbly, sweet personality, his great passion for music, and his easy acceptance of the hand that life has dealt him. We could mention his unmitigated joy in making new discoveries, his silly sense of humor, and the stubborn streak a mile wide he inherited from both sides of the family. We could talk to you about his bravery in the face of numerous emergency room visits, hospital stays, and painful medical procedures, his gentle touch with animals, and the astonishing beauty of his smile.
"But ultimately I think what makes him special to us is what makes any child special to a parent. He is our son, an ordinary person placed in extraordinary circumstances, who, like all of us, is doing his best to make the most out of what he’s been blessed with. He is made special by how very ordinary he is despite all of the challenges he is facing. We couldn’t possibly ask for more."
You can find Jess over at Connor's Song.
Absolutely bang on. " He is our son, an ordinary person placed in extraordinary circumstances". You have managed to so clearly say what, I think, most of us parents here feel.ReplyDelete
thank you for posting this entry here.
I, too, have been lauded as "extraordinary" and I don't like the way it fits, either. Personally I percieve the "special" parents as the ones who go out and CHOOSE the one wth the genetic condition, the prematurity, the neurological disorder to bring home and love. Playing the hand I'm dealt has never made me special... :) Thanks Jess!ReplyDelete
I wholeheartedly agree!! I even wrote something along that same vein myself (http://jonathansvoice.blogspot.com/2009/12/when-ecfe-breaks-my-heart-part-2.html) . I tend to feel that people push that "you are special people" line to both attempt to acknowledge your challenges AND to set themselves apart from you. Because THEY are different... and it couldn't happen to THEM. But that is the point.... only when there is acceptance that it could be them can they truely have compassion and understanding. Thank you for your wordsReplyDelete
Haven't read anything truer to me in a long time. I think the meaning of "special" is completely worn down to nothing from being jammed into places it does not belong.ReplyDelete
I love your line about how any parent who would be a good parent to any child, would be a good parent to one with differences. It is a more approachable way to say "you do what you have to." I think people can understand that - people within and without these extraordinary circumstances.
All the best to you and your ordinary family!
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