Monday, August 31, 2009

Through their eyes....




Ada at Special Olympics, 2008

Ever since my first child, Ada, was a little girl I've wondered what the world looks like through her eyes. We are all unique and have our own vantage point, but some people 'stand out' a bit more because of their differences.

Ada has a small pixie-face, an open, trusting smile and long, beautiful fingers, all wrapped up in a body the size of a 10 year old child. She is 24 years old and has been this size since she was about 10! She has a rare from of dwarfism called Russell-silver syndrome, as well as autism. She is truly unique!

It took me a long time to forget how different she looked from other people because people just love to stare at her. She smiles, I try to.

My mantra was always this:
she is just as different from you as you are from her.

And, I believed it..and still do. Not everyone comes in the same, general size or shape and as human-beings, we have to accept this.

But, it's not easy for others to accept that my child doesn't fit their image of what a child should look like. Oh well.

I have spent countless hours worrying about Ada, crying about her challenges and trying not to take all of the comments and stares so personally.

Now, I have another little girl, Lauren, and again I wonder what information she is receiving from the world. In her mind she is charming, charismatic, cute as all get out, funny, interesting, curious, intelligent and loving. She can climb mountains, knock down mountains and conquer the world.

I know that not everyone is going to see that in her, just as not everyone recognizes Ada for the peaceful, accepting and fun-loving young woman she is.

When people see Lauren, some see the traits of Down syndrome...the almond eyes, the awkward walking style, the signing in place of speaking....and, they think about it what they will, based on their individual makeup.

I imagine that they place some sort of value on what they perceive as her most obvious attributes: Is she as cute as a typical child? How well is she doing for a child with Ds? How much time does her tongue spend outside of her mouth? How hard must it be for her Mom to raise her? Is it worth all of the trouble?

the answers:
Certainly!
Well!
Not much!
As hard as it is raising any child.
So much.

I have spent almost half of my life working as a mother and trying to get inside the heads of my children, especially my two daughters with special needs. I want to know what they know and see what they see. And, I want others to see in them what I see, though I know that will only happen occasionally and with people who make an effort.

I don't know how I got so lucky to be blessed with these amazing children; I just hope that I can someday be worthy of their praise.

Now, Lauren and Ada have one another to love and accept. They get this love and acceptance from others, but it seems right that they can enjoy it from their own unique perspective, without the weight and judgment that the world puts on them.

4 comments:

one_plustwins said...

Signe, babe you are worthy of their praise and mine too. I am glad to call you family. Cannot wait to see you face to face in a month or so.

Karen said...

Signe-I can and can't imagine what it must be like to parent two (or more) children with special needs. All the emotions and challenges and joy and heartache and love and adventure. You are a wonderful, caring mother. All your children know that!

Wouldn't it be interesting to trade places with our kids for a day and see how they view the world?
Hope things are good-:)

Beth said...

My daughter Lauren has Down syndrome also. She will be 2 on Dec 8. We call her Lolo too!

clairesmom said...

Signe,
It took me awhile to realize you have Lauren and Ada who also has SN. You are an awesome mom with awesome kids!


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