Don't get me wrong....I mean, I understand the essay. I get the concept that you plan on one thing and end up with another, but it's phrases like "slower-paced" and "less-flashy"that make me shake my head... so I'm going to get it off my chest once and for all. And let me start with...
I will never agree with the statement... (that for the rest of my life) I was "supposed to be somewhere else" and that "the pain of that will never, ever, ever ever go away" or that (my son's life with a disability) is somehow perceived as a "very very significant loss of a dream."
HuH?!?
Even if the author feels this way, wouldn't one "ever" be enough? (never ever ever ever ever ever ever ever ever )
And for her, I guess her dreams for her child were extremely grand, because the loss of them wasn't just a loss, it was a very very significant loss.
Is this redundancy and emphasis necessary?
Nobody that I know brags about being in "Italy" and how "wonderful it is there" while I am stuck in Holland looking at the windmills.
A change in flight plan? Yes. But there I must stay? um....okay....but I must? or....I get to!
Alright so I've picked it apart enough.
I've read the essay a hundred times and I've never agreed with it.
I get it, but I don't agree with it.
Maybe I'm the only one.
Maybe not?
So in case I'm not alone, I will suggest a different destination...one that I feel better defines my personal experience with being a mom to a child with a disability.
Here goes....
People never ask me what it's like having a kid with a disability, but if they did, I would say-
Welcome to the Magic Kingdom
If you've ever planned a trip to the Magic Kingdom, you know by reading about it and hearing other people's stories that you are going to a place like no other. This is a place where imagination and fantasy are a reality at every turn. You are told that once you enter the gate the magic begins, and that feeling of elation and joy remain with you as long as you are there.
You can hear about it and read about it and anticipate it all day long, and you think you're prepared for it because you've done so much work planning your trip. But the moment you walk down Main Street USA for the first time for yourself, you realize you had no idea how incredible this place really was. There are no words to describe it, because there is no other place on earth like it. There is not one detail left undone; not one stone out of place; not one person out of uniform; not one chip in the paint, or piece of gum on the ground. It's more than you had imagined, because the colors and sights and sounds are beyond anything you could have dreamed up yourself.
But your realize there's more for you to do here.
You thought you were here to just enjoy the park, but you realize there is work for you to do, and while you are delighted at each and every turn, you discover....
Liberty Square-and you stand a bit taller and walk a bit more proud knowing this place allows you freedoms and choices you didn't know were available. And if you find that there is a restriction that you don't agree with, you now know there is a place like Liberty Square, where you are allowed to make that freedom a reality for you. Your confidence in this takes you onward to...
Fantasyland-where you get on a little boat and travel the world, only to realize it is a very small world indeed, and that there are hundreds of thousands of people just like you! You spend the next part of your day humming that little tune....as you take the Skyway to
Tomorrowland-where you spend time dreaming of the future and all the possibilities and potentials that you learned about and demanded at Liberty Square.
And while you're there experiencing the most incredible joys of your life, you realize something else about yourself....a mother bear inside. You've been at the park long enough now and it was bound to happen...you felt that tinge of discrimination and injustice. You didn't know that hearing the "r" word was going to offend and hurt so much. You want to start a campaign to end it! And off you go to
- Frontierland-the place where you can pave the way where no path exists; tearing down trees and prickly bushes all the while loudly proclaiming your defense and allegiance, your pride and adoration. You boldly go where no one has yet gone before you, and you marvel that your efforts can make the world a better place not just for yourself and the ones you love, but for others that are at the park with you, and those that will visit after you.
It's Adventureland at its finest.
Like my friends Tim and Becky said when they read the essay....we've come a long way in our thinking, our language, information and knowledge since 1987.
Like my friends Tim and Becky said when they read the essay....we've come a long way in our thinking, our language, information and knowledge since 1987.
Raising my child with a disability is like discovering freedoms, dreams, adventures, hopes and opportunities that I didn't know even existed. And I can't get on the bandwagon fast enough. I can't buy up enough travel guides and maps and I devour each and every one. I go online and share with my new friends who have also been to the Magic Kingdom. I can't talk about my son enough and if I could get away with it, he would be the topic of every conversation. I am happy. Encouraged. Delighted. Never alone. I have experienced depths of love deeper than what anyone ever told me I would. I never want to leave this place.
So hear me say this, loud and clear:
I am not supposed to be anywhere else on earth.
I have not experienced a loss of any kind.
My son is a GIFT.
I am the luckiest woman in the world because I am the mom of a little boy with Down syndrome.
