CAUTION: This post is probably might be oozing a little more than people are used to from my blog…
Anyway, last year, June 17, 2008, to be exact, my wife and I were gifted with a baby boy. As an added surprise, he was born with Down Syndrome. Immediately, we were hit with the full range of emotions, the usual happy giddyness that comes with having a child, the anger and frustration about not knowing about the diagnosis beforehand (a whole saga in itself), the worry about what the future will hold for him.
To this day, ten months later, I look at what is perhaps the sweetest little boy in the world and I still tear up while trying to put the “what ifs” out of my mind.
Here is an essay I recently stumbled across that sums up my thoughts and feelings quite well. The author is/was a Sesame Street writer with a son with Down Syndrome:
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Welcome to Holland
by Emily Perl Kingsley
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 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…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 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.
© 1987, by Emily Perl Kingsley
Health-wise, we’ve been lucky so far…through countless specialist appointments, he has been cleared of most issues associated with Down Syndrome. His heart and kidneys are good. He’s got little glasses to correct for far-sighted vision, and hopefully get rid of his eye-crossing. Through the New York State funded early-intervention program (which has been a bureaucratic horror show–it’s just now getting better), we have a handful of different therapists working with him at the house. It’s a rare day when there isn’t a therapist around for an hour or so. Even at 10 months of age, our intent is to give him the best shot at normalcy as we can.
Anyway, even so young, he has a personality that just begs to be mushed up, and he’s perfectly happy to let even perfect strangers cuddle and hold him, offering up tons of smiles and baby talk and wet, slobbery baby kisses. While he’s awake, it’s impossible to ignore him–not because he’s crying (a very rare occasion), but because he’s so cutely irresistible. Thus, the only time I seem to get work done these days is when he’s asleep.
I don’t know if anyone remembers a year and a half ago while I was still advertising on the Warrior Forum practically giving away Caffeinated Content as a WSO, I would take 10% of my sales and donate them to various charities. One of the most rewarding charities involved providing needy children with Christmas gifts and has become an annual family thing, now. In the name of Caffeinated Content, I’ve also donated a tidy sum to Autism Speaks. Now, though, I think it’s appropriate to direct a portion of future sales to one of the major Down Syndrome organizations. So that’s what I’ll be doing for the next indefinite period of time. 
Strangely enough, even with all these words, this post just seems unfinished. I guess if I figure out why, I’ll revise it.
