Tuesday, December 2, 2008

But I thought we were going to Italy?

Yesterday, 2nd December, James and I celebrated our 13th Wedding Anniversary. I quite like the number 13. I like to think of it as Our Lady's number, as she appeared to the children of Fatima on the 13th of the month from May to October 1917.

It was also the date when we received a diagnosis of atypical autism (also referred to as PDD-NOS) for Roo.

For some time I have thought that if he is on the autistic spectrum, that would be the most likely diagnosis. However, I was hopeful that his difficulties were the result of a more general delay.

At the moment I am still processing what the diagnosis means for our family. I want to push the pause button on our life while I sift through the implications and emotions. Strangely , this diagnosis doesn't feel as difficult to comprehend as Koala's diagnosis of Aspergers. Perhaps because we have been here before and know some of what's coming.

I'm trying very hard to not feel sorry for myself, and sorry for the reshuffle of my dreams for Roo and his education. I'm trying really hard not to feel cheated when I hear about other 4 year olds who are starting to read; joining in on the home school gymnastics class; talking non-stop, in short, just being normal 4 year olds! It hurts.

I don't want to be here in Holland!

"Welcome to Holland"
By Emily Perl Kingsley, 1987. 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.


Suzanne said...

What a wonderful story that hits 'the spot'. At some stage of our lives (or many),we all go to Holland, but one thing about Holland is that we see the deep beauty of all around us, and in the end that is what the diversion is about...the 'riches' we gain from within.
I love you Tricia

Suzanne said...

Tricia, when you were 14/15 years young you had some tests to see if you had the same kidney disease as your father. I had so convinced myself that you would not have polycystic kidney disease that I was totally shocked. We had gone to the doctor's in two cars, as I had to go somewhere else after the appointment, and I was so pleased that I could get into the car and cry my eyes out, that I didn't once think of how your Dad must have felt, knowing it was he who passed this to you.
Your pain is greater because of the two boys on the spectrum. I wish I could do, or say something to make the burden lighter. this I do know...I am proud of you, and I know that your father would be too. What I also think is: isn't God wonderful? He has His own timing, and it most certainly isn't the same as ours, but the REAL you has blossomed into something so strong and beautiful, and so full of love for Mary and her Son: that is so rich and your boys and everyone that surrounds you feels the radiance of that love.
I've shed my tears again for you. Never think that you can't ask more of me than I am giving.
I love you

Purpleflowerpatch said...

Dearest Tricia, I know there are no words to soothe the turmoil you are in right now, but I am praying for extra graces to lift you and carry you forward, to allow you to see the hidden beauties in Holland. {{{{hugs}}}}

Anonymous said...

I feel very sad for your pain, We are praying for you. Love & hugs, Leanne