Living in Holland...

I am going to do something a little different for this week.  My son, Jack, is very ill.  I am very stressed and very sleep deprived.  Therefore, I am going to let someone else write my blog entry for me.  A mother, whose child also has Noonan Syndrome, posted this on her Facebook page last week, and never have I been more moved.  Never have I so totally and completely related to something that someone else has written.  People often ask me how I cope with knowing that my kids can't grow or gain weight, that they see specialists frequently instead of just annual physicals, that they'll never go horseback riding or play football, or that they can't ever get over a stomach bug or a sinus infection without the assistance of a hospital stay.  I wish that I could share this with all of them.

While I loved this story, I wanted to make sure it was legit. I did my research, and I was thrilled with what I found.  The writer, Emily Perl Kingsley, has been a writer for Sesame Street since 1970.  Her son has Down Syndrome, and she played integral part in featuring children with disabilities on the show.  In doing so, she provided a voice for special needs children and their parents.

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WELCOME TO HOLLAND  by Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

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.

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I have been living in Holland for quite awhile now.  It took awhile to get comfortable, but I am happy here.  It is quite beautiful.  And like Ms. Kingsley, I have met a group of people that I never would have met, from all across the world.  I have been involved in a network of other mothers, who have children like mine.  The support that we have provided to each other, and the understanding that we all share has been instrumental in learning to live the life that we now live.  Two of these mothers that I have become close to, have children in critical condition right now.  Two little girls are fighting for their lives, on opposite sides of the globe, connected only by a genetic condition.  Their mothers are among the bravest and most faithful of anyone who has ever spent time in Holland, and my heart aches for them. Holland is a much easier place to live when your children are there with you. There is no worse feeling in the world, like the moment you kiss your child goodbye and place him in the hands of his doctors.  The waiting and the uncertainty is pure agony.  But you do it with the hope that your child will come back to you.  It's that hope that gets you through, the hope of holding your child again. As a special request from your dedicated blogger, please say a prayer today that these little girls recover and get to come home to the people who love them. 

Abby and Bella, so many people are thinking of you and sending you strength right now... please get well soon.