Sunday, January 29, 2012

Sometimes I Forget

Sometimes I forget our world probably isn't the normal to most families. Do most families know all the details of an event to prepare their child? Do all families do a picture schedule of the days with their kids? Do all families do a sensory diet multiple times a day to help them feel normal inside? Do all families pay a lot of money for extra therapies for their child? I sometimes forget that isn't the normal. For almost six years that is all we have known and will continue to know. Once our second son was born (not a Fragile X Carrier) I finally understood what it meant to NOT have to do those things. What I thought wasn't normal was actually normal. It took me a while to understand that Liam was able to do things that Landon would have never done if he wouldn't have been in extra therapies, been prepared by us, etc.

For me, having a child with special needs is normal and having a child without special needs is normal. We once did a video testimony about our journey through parenthood. I stated that having a child with special needs made me grow in so many ways that are uncomfortable for most people. I will admit, it was uncomfortable for me at first too. I didn't like talking about Landon's needs, I didn't like admitting he was special needs at first, and I didn't want anyone to see that he was different. Until that one day a good friend of mine sent this little story to me.

Welcome To Holland

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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