A Work In Progress

So, over a year has passed and I haven't added any new content to this page. I have been busy with work, school and life but intend to get this up and running soon. In fact, I am working on a documentary about our experience with Ben.

Ben is doing really well right now. He is in 3rd grade and continues to be a successful student. Today is "Dress for Success" day and he wore a blazer and collared shirt to school. :) I should have snapped a picture; I'll try to remember to do that when he gets home.

Anyhow, lots of great things in store for 2012! All good things to all!!!

Welcome to Holland

Welcome to Holland 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 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.

In the beginning....

Once upon a time I had two healthy boys and was expecting a third. I never thought that I would ever have to deal with anything as cruel as spina bifida. But on September 8, 2003 my entire world changed when I gave birth to my third son, Benjamin. Ben was diagnosed with spina bifida right away and had surgery to repair his exposed spine a couple of hours after his birth.

This blog is a tribute to children and parents everywhere who deal with this terrible diagnosis. I hope that through my stories and pictures of Ben you will see that children diagnosed with spina bifida can have happy lives. In the beginning I spent hours online reading and researching, hoping for a magical answer to a question I couldn't even formulate. In this world of technology, we sometimes have too much information at our disposal. That was true for me when uneducated google searches yielded pictures of babies without skulls and stories of parents who had to bury their tiny babies. I know that this is a reality for some cases of spina bifida, but it isn't for every case. Depending where along the spine the malformation occurs and how the family deals with it have a lot to do with the outcome.

I don't know everything but I've been meaning to journal my experiences since day 1. I have written some things down but until now I've kept them private. Now I hope to share our experiences in the hopes that they'll turn up in someone else's google search.