Monday, February 18, 2008

Normal?

Yesterday (Sunday) we went to my Grammy Abell's house (My Mom's Mom). My Uncle Terry was in town from PA for the weekend so everyone wanted to get together and see him. Grammy had a good turnout, there were lots of people there. It was nice to see Uncle Terry.

I have a cousin that has a little boy that is two days younger than Will. It was really hard for me yesterday. I could not help but look at B. and compare Will to him. B. is walking, eating table food, trying to talk, etc. Will is doing none of those things.

I am not sure if I am sad for Will because he doesn't fit into the "normal" mold or if I am sad for myself. Before both of my children were born I would dream about what they would be when they grew up, the things that they would accomplish in life and things like that. I still have those dreams for Caroline but my dreams for Will are now altered from what they used to be. I dream now that he will someday be able to walk and to be able to communicate with us, whether it be vocally, using signs or a communication device. I want my child to be able to tell me what is hurting or what he wants. I want him to be able to tell someone if they hurt his feelings and I want to know for sure that he is understanding what I am saying to him.

I realize that each child is different and I should not compare but it is so hard not to do. I feel like I have excepted my "Holland" but sometimes it is hard to stay.

Welcome to Holland
c1987 by Emily Perl Kingsley. All rights reserved
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.

Please do not think that I am completely grateful for my William. I think that he is a true treasure. But sometimes I miss being "normal" (what ever that means!).

2 comments:

Tracie said...

Myssie-

I just wanted to let you know that your passage was one of the most beautiful things I have ever read. I cried when I read it. I was hoping that maybe we could get Caroline and Madison together for a playdate sometime...Hope you can make it to Mad's bday party on the first....You are a very special person and mother and I think that Will will become something greater than we can even imagine.

Love ya

Tracie

Jessica said...

Im here.
Jessica