Test Results

23 Weeks

We received the Harmony test results back [my bloodwork] and confirmed what everyone thought; our daughter is high risk [99%] for Trisomy 21 / Down Syndrome. It’s a little bizarre receiving some confirmation and reality settles a little deeper. 

I don’t know how to respond when people say “I’m sorry,” - I’m not sorry. You shouldn’t be either. She will be a happy baby and the doctors will fix her heart and stomach. She’ll laugh and read books with Mommy and Daddy and play with her big sister Nora. 

So far the most help has been reading other parent’s accounts of raising a child with Down Syndrome. My favorite is titled, “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 have never 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, 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.”