Splendid Mayhem: More on the Communication Device

Welcome To Holland

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.

Monday, January 21, 2008

More on the Communication Device

I was thrilled when we got it last week. Today, I look at it and think- Is this really how I am going to communicate with my child? Through a computer? I know this should be a positive thing. He's done very well with it. He seems to be figuring out what it is used for pretty quickly. Still, it doesn't change the fact that it just sucks! Why does he have to speak using a computer? Why can he not use his real voice? Will I ever hear my child say "Mom"? This is just to much right now. To much, I tell you....

2 comments:

DawnJanuary 21, 2008 at 8:28 PM
I'm sorry Jess! Someday, hopefully someday. I feel so lucky that Austin is really mild, but a weekend with the girls and other boys makes me realize just how handicapped Austin is. Just try to see the positive in this for now, and hopefully someday you will get your wish.

Sorry about your cardiac issues. That is scary. I had a rapid hb a couple years ago and they realized I was hyperthyroid. I hope they get you figured out soon. That made me so jittery.
~Dawn
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Trish ~CnJ's Mommy~January 22, 2008 at 9:44 AM
{{hugs}} I know where you are coming from. That was our next step with Jacob, when he started babbling finally at 3 years old. We gave him some more time...and now he's saying words. Not communicating yet...but understands some words.

I hope the meds work...I was on Zoloft off and for the past 3 years...and it DOES help.
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