I've been looking back over the many, many, many blog posts I've made. I got caught up in 2008 when I promised to share Matthew's story here. I think I did a couple of posts and then forgot all about it. I was torn between sharing his story and allowing him his privacy. I know how important it is for others who have children who have Nonverbal Learning Disorder, or similar disorders, to find other parents who have been there, or are still there. Knowledge is power. I wish that I had more information when Matt was in his younger years. I've been enjoying reading the blogs of others who have similar experiences. It's always helpful to know that you're not alone. It's also extremely important to get the information out there on what this disorder is and the huge impact it has on the individual and their loved-ones. Again, knowledge is power. It's so important for others to be aware of this invisable disability.
So, I've decided, once again with his blessing, to share Matthew's story.
I shared this poem in 2008 and I think it's a great way to set the stage again. It was a poem written by a mother who has a child with Down's Syndrome but it certainly speaks for all mothers who have children with challenges.
Welcome To Holland
by Emily Perl Kingsley©1987 by Emily Perl Kingsley.
All rights reserved.
I am often asked to describe the experience of raising a child with 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.