A Day in my Life

I've been trying not to post a lot about Matthew and his Nonverbal Learning Disorder. I'm very aware of him being 17 and his right to privacy.

Today I've been blog surfing and reading blogs from other moms who walk the same road that we walk with a child with NLD. I asked Matthew what he thought about these mothers sharing their child's stories and if it bothered him that I shared some of his challenges here. He told me he thought it was good. He said that it's good that people share their experiences with each other so we can all help each other.

What a guy!

In one of the stops I made today I read a poem (I've read it before, but it seemed to have extra meaning for me today.) 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.



With the OK from Matthew, I will be sharing more of his story here. I feel that we've been on this road a long time and are now entering a new phase as he enters his adulthood. I hope that in sharing where we've been ... the good, the bad, and the ugly ... we can be of some encouragment to others who are just starting out in this.