Holland

Another mama I've been talking with has shared with me an analogy to what our family has been going through that might help other people have some idea of what this is like for us.

Imagine you had your bags packed and were getting ready to leave on a trip to the Caribbean. You were all ready to go. This trip had been in the works for months. You get on the plane, take your seat, sit back and dream of the beautiful sandy beaches, and the warm blue sea. Then the plane lands and you get off. ... in Holland. You are a little stunned, saddened, disappointed. The people there point out the beautiful tulips and scenery. Though it is beautiful, it is not what you had envisioned. It is not what you had planned, and not what you had prepared for.

Having your child handed a life changing diagnosis such as ASD is something like this. This is not what I dreamed of for my child. I had prepared, are best I could, to ensure my child grew up healthy, happy, and loved. But I did not prepare for this. I feel so ill-equipped to be an effective parent to my child. And I am sad. I'm sad that my little boy's life will continue to be filled with specialist and therapist appointments. That he has a label. That he may be seen as "different" and picked-on because of it.

Am I disappointed by my child? Absolutely not. Do I love him any less that I did before? Hell no! I have been, and forever will be, completely in love with my beautiful little boy. He continues to amaze me every day. He is the smartest, brightest, most loving little boy I could ever be blessed with. I wouldn't trade him for all the "normal" children in the world.

But I just don't know yet if I am prepared for this destination.

~~~~~~~~~~

***Edited February 22, 2010 to add:

Well, neither myself, not the mama that shared the little analogy with me realized that it was actually a short essay (I guess you could call it that) written by Emily Perl Kingsley in 1987, whose child was born with Down Syndrome. (Thanks Lauren for pointing this out!) And it's Italy, not the Caribbean, though I have a feeling showing up in Holland with your bag full of bikinis and sarongs might be a bit more analogous to what we're experiencing. So, without further ado, here is Kingsley's essay:

Welcome to Holland

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.