Travels

ROLLERCOASTER RIDE

After the official diagnosis, our rollercoaster ride continued.  Although we were thrilled that we finally had a diagnosis, it also meant, we had a diagnosis.  This rare disease and everything that came with it was scary, and downright devastating at times.  I did the worst thing possible and scoured the internet looking for something, anything to tell me what the heck was going on with my son.  I ended up scaring the crap out of myself and the more I looked, the scarier it got.

Okay, so enough with that.  But what came later also wasn’t fun.  Our family definitely felt different and I began to feel like we were on our own island.  It was lonely and depressing at times.  This was so not what I wanted for our son.  I think I felt my American dream for Brady slowly fizzle and what was left was anger and disappointment.  Like most parents who have been dealt similar cards, I had to ask, why Brady?  Why my son?  This beautiful, innocent little boy that was forced to battle food every single day. 

Not long after diagnosis, I came across the following excerpt entitled, “Welcome to Holland.”  This was written by Emily Perl Kingsley in 1987.  This spoke to me on so many levels and still does. 

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.

 

ACCEPTANCE

I can safely say that I have gone through the four stages of grief and well on my way to the fifth, acceptance.  Holland isn’t so bad.  Most days.  And as for that all American dream I had for my son?  It's still there, it just looks a bit different now.