Tuesday, February 17, 2015

This is going to make you cry, but I have a point:

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A friend sent this to me last week and I thought it was great, it has a re-orienting effect on me when I read it. I think just about any parent, or person really, can relate to this. I think I spend a lot of time numbed and tired with spasms of energy and anger. And honestly I'm not sure if there is a resolution that I should come to, like in the poem it talks about "the loss," but what exactly IS the loss? What will Maddie be like? What opportunities will she have? Literally--no one knows. Today Maddie has been on one, I don't think she feels very good. All say she has been grunting and crying at me and she kept slapping her face and her head--no matter what I did I couldn't get her to stop and in this one moment I grabbed her hand and I wanted to squeeze it so hard--I was so angry at her little hand--not her, her hand. In this world where I want to blame someone for everything from cupboards left open to stupid thing said--who do I blame for this? Autism is not my enemy when she is happy, I feel like we do a good job cooperating then. I so appreciate her quirkiness and the little strides she is making, her routines...but when she is unhappy--I feel like Autism builds a maliscious invisible wall around her and I'm unable to help her, unable to make it better and unable to find someone to blame...all the while Autism keeps slapping her face.

In short we had a really bad morning. The waitress brought her a grilled cheese sandwhich with white cheese! Who does that? Who makes a grilled cheese sandwhich with white cheese? Now I DEFINITELY have someone to blame for that. But you know, life moves on and tomorrow is a new day.

Yes yes...many tomorrows have come and gone since I wrote the above post! Maybe it's a tad depressed sounding but it's also real for me so I'm posting it anyway. I absolutely do not want anyone to feel bad for me or pity me, but I do long to be understood. Truly understood...then again, don't we all? Miss you guys to pieces and pieces and pieces.