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.

To view this recording:

https://carsonharrisfoundation.ilinc.com/join/bfvtbrv

Information:
Date: Tuesday, January 17, 2012
Time: 06:00 PM EST
Duration: 1 Hour(s)
 
In order to participate in the webinar you must pre-register at the following link:
https://carsonharrisfoundation.ilinc.com/register/bfvrfks
 
Once you register, a “join” link will be sent to you.  Please use this custom join link to attend the webinar.

The recording of “New Developments in the Ketogenic Diet for Infantile Spasms”, presented by Eric Kossoff, MD & Zahava Turner, RD is now available.

To view this recording:

 https://carsonharrisfoundation.ilinc.com/join/jjwsjsw

YouTube Videos as a Teaching Tool and Patient Resource for Infantile Spasms
Mary Jane Lim Fat, Asif Doja, Nick Barrowman and Erick Sell
J Child Neurol published online 6 May 2011

Here’s a link to the abstract:
http://www.ncbi.nlm.nih.gov/pubmed?term=youtube%20spasms

Check out the Carson Harris Foundation YouTube Channel where we have listed many of the top 10 videos from this study as our “favorites”.  This may be an excellent patient / teaching resource for Infantile Spasms. 

http://www.youtube.com/user/CarsonHarrisFDN?feature=mhsn#p/f

We could not agree more that when used properly, YouTube can be a great resource as we were able to diagnose Carson right away from watching a spasm video that was posted by another parent.