It’s the laugh that does it, that joyous, infectious belly laugh that encourages others to join in the fun. That laugh has defined Luke’s sunny outlook on life from Day 1 and has been an inspiration to us all. (more…)

©1987 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 guidebooks 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.

As with all things, until it’s your personal experience, one can empathize, but truly never know what a specific journey entails. And so it is as the parent of a special needs child, or as we call it in our house – an extra special needs child. Our belief is that we all have special needs, and some of us have a few extra ones. The spectrum of special needs diagnoses is so widespread and vast, that each journey is truly unique.
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I remember with utter clarity the dizzying feelings that swept over me when I became a mother for the first time: the heady perfume of newborn skin next to mine; the sheer perfection of 10 tiny toes; the exquisite, long dark eyelashes. Most of all, I remember the giddy sense of adventure—the feeling that I was embarking on a voyage into the unknown that would change my life forever. (more…)