Today is World Down Syndrome Day! The day we celebrate that wonderful population who happen to have 3 copies of the 21st chromosome (ergo, 3/21).
There are certain moments in your life you will never forget. Certain phrases you hear that you will never forget. One of the most powerful I heard was the morning of November 27, 2000, when a nurse sat next to my hospital bed and said, “he [my Jakey] has some characteristics which are consistent with Down syndrome.” I was holding my newborn son, knowing he was about to go to NICU due to pulmonary hypertension. I heard little after that. I remember crying softly but worrying that a hot tear might fall on his face. My older son, then 15, already knew, apparently, as he had heard the nurse and doctor talking about it right before they approached my bedside. He told me later he had turned the video camera off, worried about how I might take it. (I have great sons, if I do say so myself.)
When my little guy was born, his enhanced chromosomal count was a surprise, (I had chosen no genetic testing). Certainly not a happy one. I have never been more scared in my life. But I have also never felt more fiercely and protectively in love than I did that day — and every day since.
As he spent 2 weeks in NICU, at times gravely ill and not knowing whether his PDA would close without surgery (thankfully, it did), I read — to him, about him, and I sat and waited. Waited. Prayed. Worried. And worried some more. Learned about all the awful things that might happen to him.
Now, 10 years later, the vast majority of them have not happened. So if I had one thing to tell a new parent today it would be to *try* not to think too far ahead, and remember that not everything that could go wrong will. It rarely does. And most importantly, the joy, happiness, accomplishments, and love you get from having a child with Down syndrome far outweighs the negative. By leaps and bounds!
And to those who know someone who has a new baby with Down syndrome, please do one thing, if nothing else: say “Congratulations”. It did not hit me that no one had said that to me for about 24 hours until the President of our local Down Syndrome Association did the next day when she called my hospital room. Another phrase I won’t forget: “I hear you had a beautiful little boy — congratulations!”
And I remember in the packet that the hospital social worker brought me, the following poem, well known to my Down syndrome friends, was included. I cried when I read it then, and I cry when I read it now. And I can’t put it any better than Ms. Kingsley does, so I share it now, in honor of World Down Syndrome Day.
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 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.