One Week Left

January 24, 2011

One Week Left

7 More Days of Voting to win a grant from the Pepsi Refresh Project to help fund gene therapy research. We are still in 1st place, but we need all of you to keep voting.

Remember to vote EVERY day for the month of January.

1) Text 105582 to PEPSI (73774)

2) Go to www.refresheverything.com/curesanfilippo

3) Vote via facebook by clicking this link and using the app.http://apps.facebook.com/pepsi

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Comments

Laura said…

I have been reading your blog for a while now...I am also doing a lot of voting! I wanted to let you know that your love for your children is more than evident. You and your family have been an inspiration to many...and the lives of your children have already made a huge impact, showing all of us, deep love, compassion, joy, and strength. The light in your lives shines through the really hard stuff....just know that.
Laura

January 25, 2011 at 9:39 AM

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 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.