It can be hard to explain what it's like having a child with special needs to another person who hasn't walked in those shoes. This essay kind of puts it in perspective.
And for the record... My journey started in Italy, I've been there twice. Then, on my third trip to Italy, I landed in Holland. Now I have one foot in Italy and one foot in Holland. And they are both SPECTACULAR places to be. I wouldn't have it any other way.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
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.
He was a nice doctor with good bedside manner. He offered to do an MRI but stated that it was probably not imperative because she's showing regular progress and gaining strength. However he did say that it's quite possible that there is a neurological aspect to Little Lady's AMC because her left side is substantially weaker than her right, and one weaker side (especially left) typically indicates something neurological.
He also informed me that MRI's do have a tendency to sometimes be misleading, especially in cases such as hers. Also, having an MRI done would not change the course of treatment that she is receiving, nor would it tell us "why" she has AMC.
Because of these reasons, it would basically not make a difference one way or the other, we will not get the MRI done at this point. If in the future she stops progressing and gaining strength, or we see a need to re-visit this decision, we will.