Tuesday, December 16, 2008

I Wish I Could Change The World

Taking part in the Make A Wish radio-thon on Monday was an eye opening (ear opening) experience.

Once again, I'm reminded of how lucky we are. Yes, our son had cancer. It was (still is) scary. But statistics are on our side.

During the radio-thon, we heard stories of kids who died just days, or even hours in one case, after their wish was fulfilled. That puts tears in my eyes right this very second.

There are so many stories. Too many.

So Laurie told me about this family who recently took their own Make A Wish trip to Disney. Honestly, I think I felt a piece of my heart break off when I read their story. Both of their children have a terminal illness called Sanfillippo Syndrome. You can read more about it on their blog, but the bottom line is both of their children are slowly dying.

Friends of the family are trying to raise money to help this family move to a home that can accomodate the childrens' changing needs. You can read more about the efforts of their two college friends at A Hundred For A Home.

I know I throw requests out there for donations for different organizations now and again. We all have our favorite charities. I have mine, you have yours. But I feel compelled to donate to this family because I can't even comprehend how you lose one child, let alone two. It must be agony if you can survive it and still feel.

Shannon, the mom, calls her blog "Exploring Holland." Here's why:

WELCOME TO HOLLAND by 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 flight attendant 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 who 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 being 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 for some time, the pain of that will never go away...because the loss of that dream is a significant loss.

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


What a beautiful, poignant way of saying life doesn't always turn out like we planned.

We had so many people--friends, family, total strangers--reach out to us when Finn was in treatment. We can never repay any of that because you can't put a pricetag on compassion. Without it, we never would have made it. So our goal is to just keep paying it forward when and where we can.

I'm going to head on over and donate what I would have spent on coffee this month. OK, I actually don't drink coffee, but I'm going to pretend I do and donate that amount anyway.

And then I'm going to be grateful that even though life didn't exactly follow the path we thought it would, where we are right now is pretty darn good.

Blogger friends, please help spread the word. . .

1 comment:

Mountain Mama said...

Their story is amazing. Thanks for sharing your heart on the matter. Great perspective!