A Personal Perspective

The following link contains a variety of stories from real families who have children with Down Syndrome: http://www.ndss.org/My-Great-Story/Virtual-Storybook/Family/

A common theme in these family stories is grief over the loss of the “perfect” child, the healing process, and realization that things aren’t as bad as they once seemed.

The personal perspective is feelings-based and most stories end with positivity. 

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 guidebooks and make 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 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 never would 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 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 go to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

- Emily Perl Kingsley

What is Silenced?

• There is no listing of limitations, complications, or extreme negativity.
• The propensity for grief cycling is not always mentioned although most families continue the cycle for many many years.
• The affect of the grief on their children and rest of the family is rarely mentioned.

Impact on Children and Families

• This type of information is empowering to families as it gives a point of commonality between families with similar experiences.
• The stories present a point of inspiration, hope, and strength for other families. 
• The stories all outline the idea that Down Syndrome is not necessarily a pre-sealed fate or burden. 

Positive Outcomes for Children and Families

• Stories from other parents who have experienced the same feelings can be uplifting. 
• Parents don’t have to feel like they’re alone in their grief and realize their feelings are normal and valid.
• A positive support system can be empowering as parents learn solutions that have worked for other families and possibly find the right solution for their own families.