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Showing posts from February 27, 2010

Welcome to Holland

Thanks to Facebook and some Pompe email lists, we have met many people who are living the same life we are.  Some have passed these steps years ago while others are just beginning.  Anyways, a new friend sent me the following story which I thought you might enjoy.  This isn't about us or Pompe.  It has a message for everyone who's sharing this adventure with us or have landed in an unexpected place in life. 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