Tuesday, February 28, 2012

Just some things...about Holland

There is a documentary on TV tomorrow night about a girl with Cystic Fibrosis who is planning her wedding while waiting for a new set of lungs. It airs at 10pm on TLC tomorrow, 2/29. Here's a link to the article about the documentary.

I had a Tupperware fundraiser in February that raised $618.75 for our team this year. Shout out to all who participated, because that is a totally awesome profit!

I'm still pregnant.

We had a little birthday party for Drew & Lily this past weekend. They don't turn 2 until March 14th, but I think I'm going to be either pretty busy or very pregnant then so I had it a couple of weeks early. It was so great to have our friends and family here celebrate these two little wonders in my life, each high maintenance in their own way. You often think of twins as two peas in a pod, but outside of being from the same "pod", these two couldn't be more different. I must say how freaking adorable they both are, and how they both make me smile and laugh all of the time. They definitely know how to work together to make me crazy, but I couldn't love them more. And I can't believe they're already 2!

I've been working on my presentation for CF Education Day at Children's on March 17th. I'm hoping that the baby gets here before then so that I can go. I have so much to say, I seriously could fill up a half an hour but I've been given 5 minutes. I decided to focus my speech on the importance of advocacy. I had written something that I was originally going to read, but then I got the presentation from the National Advocacy Leadership Conference and decided to take a few slides from that and speak about advocacy and what I've done and why its important rather than just reading my thoughts. So I'm combining the two and need to work on it a little bit so that it gets people interested. I have only 5 minutes to get people interested so I'd better come up with something powerful.

I found a story that another CF mom had shared on her Facebook wall a week or so ago and I really loved it so I want to share it on here as well. And that will be all I have to say for this evening!
Welcome To Holland
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 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.

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