Monday, June 11, 2012

The Sigh

The sigh. I hate it.

I hate that when I tell you my daughter has Down syndrome, you drop your shoulders, tilt your head and sigh. The look of pity like its something awful, your sad demeanor joined with your depressing "oh" or even worse, "I'm sorry". I hate it.

I have to double my cheerfulness to over ride the mood you just placed on the room. Trying to quickly explain this isn't something to be sad about to someone who is still looking at me like I told them she was only given 6 months to live. Did you not notice how perfectly normal and happy everything was until you got all depressed over the mention of Down syndrome? Did you not notice that huge smile on my daughters face that three seconds ago you were melting over? No, now you are only noticing what she is not doing. How she is tiny and not walking. How she doesn't understand simple directions and only has a few baby words. In a split second, you judge my daughter. You limit her. You stab a knife through everything I live for to make this a better more accepting world for those with special needs. And I hate it.

I can hide from it for now. She is young... I don't have to say she is almost two, I could leave it that she is one and you would never know the difference. Sometimes I wish that I would just lie about her age, so you would continue to smile and dote over my beautiful little girl and not wonder why she does not act or look like a two year old. But that would only solve the problem temporarily. In the not so distant future I won't have to say anything, you will just know. And your smile wont be one of admiration but one of pity. It wont be watching, but staring. Or worse, not even looking at all.  And I hate it.

Please, someone, just get up on the highest mountain and scream for all to hear, "DOWN SYNDROME ISN'T BAD!" Oh, but wait, we do that every day... just they don't really believe us. How can different not be bad? How can medical complications not be bad? How could mental handicaps and physical handicaps not be bad? But see, that's not what we are saying. We are saying DOWN SYNDROME isn't bad. That because my daughter has an extra chromosome therefore does not mean that her life is bad. Certain circumstance in her life are, yes, hard or per say bad. But her life itself is not. Its actually quiet flipping amazing.

But you new friend, acquaintance, stranger, if we can not get that through the general populations minds with thousands of hours of research and advocating, how am I going to explain that to your eyes of pity in the few minutes we come across each other. I've gotten pretty darn good at quickly kicking Sadness's butt out of the room, but then I am left there with Ignorance. I try to brush off the sting of pity with a quick, "No, life is wonderful" but then the awkwardness leaves no time to really explain it. You leave still feeling sorry for me and my daughter and I leave pissed off that the world truly views my life from the outside as pitiful. And I hate it.

The sigh. It gives all your thoughts away. You do it subconsciously, almost involuntarily, it just comes out. And there is no taking it back. You know what my involuntary thing is when I see someone different? A smile. Not because I am better then you, but because I know. I know that the precious life, that has seen more and been through more then you want to imagine, is beautiful. I know that that precious life has the same basic need that every human being has- to be accepted and loved. I know that their day was probably going pretty damn fantastically until you pitied them and they remembered the world sees them as pitiful. I know how good it feels to be smiled at with understanding and admiration, not sympathetic, eyes.

The sigh. I hate it.

A smile, that makes my day.




Oh, and hello again Blog. I told you it was not a good bye. Not sure when our next encounter will be, but until then, see you later.

10 comments:

  1. I don't understand the sighs and comments, either. I've never met someone with Down Syndrome who wasn't a complete joy to be around. My husband's first cousin has Downs, and he is just the coolest guy. I think Fiona is amazing and beautiful, and that she was made perfectly; just the way God wanted her to be.

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  2. I stopped telling people. Then I don't have to hear the sigh :)

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  3. This is perfect! This totally sums up how I feel when people give me that pathetic, simpering, sympathetic smile...I will never forget one lady asking me if Russell was a good baby, when I replied yes he was, she tilted her head to the side, sighed, and sadly smiled and said "Well at least that makes up for the rest" I was seething!!!!

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  4. Hugs. I know it's hard, but I agree with Patti. My new mantra is "This is my amazing daughter!" the end. And then I get back up on my mountaintop proclaiming how awesome every little thing about her is- even (gasp) Down syndrome.

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  5. When I see that look of pity, I punch her in the face....but only in my mind. Sigh. Great post!

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  6. "Sigh", right back at them and say... I know she takes my breath away too ;)

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  7. Amen! This post spoke right to my heart. I cannot tell you how many times I've had to "double my cheerfulness" (brilliantly phrased, Shannon) to override people's pity about my sister. And they just don't understand. And everyday I struggle to think of a way to better enlighten these people. I could go on and on with this topic but I'll stop at thank you for sharing your thoughts. Beautifully written!

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  8. Firstly I think your daughter is amazing and can fully understand one's annoyance with the 'sigh', but being a childcare worker and only knowing a couple of kids with ds I come to understand why people sigh and pity. It's just because they don't understand, they have never had a child with ds and they think down syndrome is a bad thing because it's generally made out to be so. You and so many others are doing a great job advocating for down syndrome and spreading the message that down syndrome can be a huge blessing. Well done

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  9. I would just sigh tilt my head look at you think you were the luckiest mom in the world, she is beautiful and a true gift!

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  10. Thank you! now lets go tell everyone again tomorrow how great our children are. Maybe someday they will believe us. Maybe some day they too will be as blessed as we are now. Oh, if they only knew! Ps V had that same dress! Dont you just love Target!?!

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