For Our Girls
Families working to raise funds, Supporting each other
and always looking forward to the day when our girls
have a cure.
We're going to see this happen!
Come join us, we're in this together.
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Life is not measured by the number of breaths we take, but by the moments that take our breath away.
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Make a Memory today.
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IRSF
International Rett Syndrome Foundation
www.rettsyndrome.org
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"I never knew that this type of love existed, until she came into my life. This love, this deep love, drives a mother to go the distance and then push to see if she can go further. It cuts to the core of dad's hearts as they are 'suppose to' fix things. It creates siblings like no other...as they go out into the world looking into the souls of friends instead of their appearance. It causes Grandparents to hurt double as they watch their children fight for the life of their own child. True Friends then stand, reach out and help one another carry the load. All this, from the birth of an angel..."
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God Bless you and if you need anything, please email Nancy at nancy@rettcommunity.org
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 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 guidebooks. 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.
