May 18, 2007


The sister of one of Aunt P's friends passed away, geez.... probably 10 years ago now. She was only 16 or 17.... maybe she was 18, I don't remember now. She had been battling some serious heart problems -- very common in Down Syndrome kids.

She was a lovely kid -- full of love and life...... and man, could she try your patience -- oh, boy. But, like any child -- she brought her family joy, laughter and yes, tears.

Aunt P's friend is like part of our family -- they've been best of friends since kindergarten, served as bridesmaids in each others wedding. I've watched this child grow into an amazing woman -- she's one of the kindest people I've ever had the pleasure of meeting.

I sometimes wonder if amazing people are born or if they are shaped by their life experience -- probably some combination of the two. I think having had and then losing a special sister has helped mold this girl into an extraordinary person. I was telling Mr Big Duyba last night that I think of her when I hear the term "steel magnolia" -- hard to imagine such strength could reside in such a delicate person -- but it does.

I remember at the funeral, someone read this story -- I always think of it when I see the parent of a special child. I wonder where they find the strength, the patience, the courage..... but they do. I thought of it again when I read Chag's post yesterday morning, and the Big Dubya's comments yesterday afternoon. I can't begin to imagine what's running through their heads and their hearts -- but this story helps me a little.

Welcome to Holland
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to help people who have not shared this 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 - to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. 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 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 will never, 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.


Aunt P said...

It will be 10 years this July that she died. She was 17 years old - just seven months younger than our (me & Mrs. Big Duyba's) brother at the time. She could be the most trying person I had ever met, but also one of the most lovable. And she loved the people in her life with such an intensity that I've rarely witnessed elsewhere. 10 years later I cried while reading this post with the same ache I had when I found out she had passed and at the funeral when her sister, one of my best friends, tried to hold herself together to read the Holland story at her sister's graveside.

I can't imagine what it would be like to have someone in my family with Down Syndrome or Autism, but I do know that I consider myself lucky to have known this special little girl.

Darren said...

That's a beautiful story. I read Chag's post too and had no idea what to say.

Julie Pippert said...

This is a great blog post with a great question.

Rob---long time one of the best bloggers ever now writing a book Rob of Robservations, Citizen Rob, and, among others, Schuyler's Monster Rob---has a group blog called Postcards from Holland based on this very thing. His daughter has a very rare condition, but that happens to be a side-piece to her life.

In reply, I think amazing people are born, but only with potential. We are shaped by our life experiences. It ends up being a choice, being amazing. IMO.

The postcards blog is at

Rob's blog is at

Julie Pippert said...

Oh I left out Kalamazoo Days and Darn Tootin, his last online journal before his current blog.

Not that it matters. I just hate it when I remember something just after I mean to remember it. LMAO

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