Welcome to Holland

First, let me start by saying we are blessed with really awesome friends and family! It has been amazing the amount of love and support they have shown for us and Charlie Claire. 

It's also amazing to me that when you find yourself in a situation you never thought you would be in that you find support where you least expect it.  I have recently had the privledge of "meeting" two parents whose children are in situations similar to Charlie Claire and reconnecting with a friend from college whose little girl had to have a life saving liver transplant.  It has been extremely comforting to be able to talk to parents who understand the place Jason and I are in right now.

One of the mom's sent me this tonight and it really meant a lot to us...

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

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.

**

We started Charlie Claire on her Sabril today.  It was a very emotional moment for me and I just need to keep reminding myself why we are doing this.  It seemed to kick her butt a bit today as she slept most of the day. 

Does this look the face of a happy girl? And please check out those STEROID CHEEKS!!!!!

Jackson Update:

Just because this is Charlie's blog doesn't mean we can't tell you all about Jackson! :) He is AWESOME! Charlie Claire is so lucky to have such a great big brother!!! Jackson is very interested in his hands, toys, the tv, etc! He loves taking everything in and is just such a good little boy! He is very talkative, full of smiles and laughs and is helping keep our spirits high!