Ds Awareness Day#17: Everyone has a story


Ds Awareness Day#17: Everyone has a story…..

Today I am going to veer off course a tad from the awareness posts you’ve been reading. So far I’ve been posting snippets about Down syndrome in general, and sharing tidbits about Peter. Today I simply want to share that everyone has a story….and, no two stories are the same. 

The story of one family touched by Down syndrome will be very different from the story of another. As hard as it may be sometimes, we must not compare or judge. In many cases the journey the families are on is an unexpected journey, but one filled with moments never before dreamed of. The following poem is often shared in the special needs communities, and one that captures simply and beautifully the experience that many have when they find their life detoured from what they planned and onto a whole new path.


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.

We are all on our own personal path through life. Some may look alike, and some may differ significantly. We need to be sure to not judge or minimize the journey of others. Nor must we compare or doubt our own journey. But, we can share. There is beauty in the story telling of journeys, the sharing of stories, the learning together from each other.

So, next time you meet someone with Down syndrome, I invite you to hear their story.  And to help you get started I invite you to check out the DownSyndrome.Love channel on YouTube. John and I were interviewed last year, and the interview was recently posted. There are also other families sharing their stories, and I think you’ll see how different our kids can be, but how alike is our description of the joy they have brought to our lives.



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