Trisomy 21 a.k.a. Down Syndrome

This is my favorite photo of our family. It was taken a few years ago in front of The Orchard House. This was the home of Louisa May Alcott. It is located in Concord, Massachusetts and it is where she wrote Little Women.

This was a wonderful day, but the reason it is my favorite is because it is a true picture of our Annie...smiling, loving life, wringing pure joy from the moment. That's my girl!

Today, March 21st, is the day the Down Syndrome community picked to celebrate, inform and advocate for D.S. Why? Because Trisomy 21 means an extra chromosome...three rather than two on the 21st gene...3/21. They do not know why that extra, perfectly normal chromosome causes all the trouble that it does. It happens at conception.

We are so fortunate that Annie is healthy. She was diagnosed with two heart defects when she was four months old. They resolved on their own and, though she still has a heart murmur, she did not require surgery...for which we are most grateful. 

(Those are real chickens in that basket!)

We have made decisions along this journey that were difficult, but we hope were the best for Annie. Annie has a tooth that is behind the others. We chose not to put braces on her because they would have had to stretch her pallet. We worried that that change to the roof of her mouth would alter her clear speech. Not to mention the pain (I wore braces, lots of pain!) and the fact that when Annie felt her first loose tooth she tried to remove it herself...with a spoon. She came to me bleeding, with her tooth perpendicular to her gum saying,"Take it out!". After this I imagined what she might do to all the hardware involved with braces. 

We have known people who have had their children's tongues reduced, eyes altered, cheek pads slimmed down, given them growth hormone injections, removed tonsils and adenoids...for reasons we cannot comprehend. Annie did have eye surgery when she was four for strabismus..."lazy eye". We tried glasses and when they did not strengthen her eye, we opted for surgery. Without it, she could have lost the use of that eye. It was a day surgery, and she went to ballet class a day later.  We moved when Annie was two and while packing I found a couple of tiny pairs of glasses hidden in outrageous places..my girl was an expert, at the age of two, at hiding and destroying glasses! We went through many, many pairs!

It is a life altering experience, having a child with special needs. It has changed our lives in ways too numerous to list here. There are difficulties and there are blessings. We have had dark days, shed many tears and, most assuredly, asked why. But...we have also laughed till our sides hurt at what we call Annie-isms, shed tears of joy and delighted in the smallest accomplishments. The stereotypical image of the happy, sweet child with Down Syndrome is inaccurate. People with D.S. are as diverse as the rest of use. We are fortunate that Annie is extremely happy and sweet, but she can also be stubborn and unrelenting...just like the rest of us. 

This post is getting way too lengthy, but I hope you will read the narrative essay below written by Emily Perl Kingsley. We met Emily and her late husband, Charles, and their son Jason, who has D.S., many years ago. Emily is an Emmy Award winning writer for Sesame Street, but those of us within the D.S. community know her for these words...

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 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 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.

                  *************************************************************

I have visited eleven countries in my life...one of them was Holland. I have never been to Italy. 

Enjoy the day,

Robyn