Sunday, February 03, 2019

Ending up in Holland when you planned to go to Italy

At the moment I am reading The Magnificent Journey by James Bryan Smith. I’ve found it an enthralling and challenging read. But today I was caught off guard by a revelation by and a story shared by James. 

If you know our family you will know in recent years that we have discovered the reason for many of the limitations I have faced in my health and body have be caused by inherited chromosomes that were faulty. For me these limitations have not had a dramatic impact to my life, apart from stopping my football career with Aberdeen FC long before I could walk! lol

However the chromosomes I have passed on to my daughter causing CMT and another that I can’t even say the name of, are having a significant impact to her life. Disability wasn’t a destination or a path that I hoped or dreamed of for my daughter. Today I discovered that James, the author of this book also has had an unexpected journey with his daughter and chromosomes. Below is an extract from the book including his story and that of a mum whose child was born with autism.

Our daughter Madeline was born with a chromosomal disorder. We had been planning for a healthy daughter and all that goes with that, such as normal growth and development, watching her one day walk and talk. We did not get that. Things did not go as we planned. Instead, we got something different. At the end of the first year of Madeline’s life, someone gave us a piece written by Emily Perl Kingsley, who had a child born with autism. She compares this unexpected change of plans to having your vacation plans changed: 

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.


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