Down Syndrome Days

      My niece called last month telling me that her friend had a 15 minute old baby and had just been told that the baby was diagnosed with Down syndrome.  She pleaded:  “What should I tell her!?!”   I was eating in a loud LA sports bar watching three football games at the time so the question took me by surprise, but the first thing out of my mouth was “Is it her first?”  “No” she replied.  I said:  “Tell her that she will love this baby exactly the same as she does her other children — that this baby’s face will be equally enchanting to her as her other children’s faces.”  My niece said:  “She’s just crying and crying.”  So I told her to also add that ”It’s allright to be sad for a while.  You have to mourn what you thought you would have, but you have lost.  It is not disrespectful to this baby to mourn that one.”

      My own Down syndrome son is 14 years old – – hard to believe it’s been that long, just like all kids who grow up before you know it.  I was just wondering how anyone else with a Down syndrome child might have responded to that sudden question.  So, I decided to put the question out in the cyber world to anyone who has been given the same news and might be asked the same question:

What would you have said?

Having a sibling with Down syndrome teaches children some wonderful and powerful life-lessons. 

What do siblings of the Down syndrome people you know have to share?

This is a video made by a 5th grade sibling of a Down syndrome sister teaching others how to treat those who are different from themselves. 

You will love these sweet sisters!

We will be adding videos to the “Phenomenal People”  location introducing wonderful, inspirational people we have met that we never would have known, or had a connection to, if it weren’t for our common bond to those with Down syndrome.

The following narrative describes this opportunity from a certain perspective.   Though toward the end it says that the pain of the differences “never, ever, ever go away” – –  that bit hasn’t held true at all for me.  Other than that, I think that the following gives an accurate and perceptive view of having a Down syndrome child.

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 guidebooks and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas of 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 guidebooks.  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 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.