Sunday, January 13, 2008

Welcome to Holland

When I first read this story I was so struck by how accurately it described what we were going through. Thank you Emily Perl Kingsley for sharing this beautiful story.

Welcome to Holland by 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 are going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks 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 then 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.

Thursday, January 3, 2008

Celebrating a vomit free day!

Matt vomits on average once a day, that’s over 465 vomits so far!

Matt has vomited on me, on his dad, on the couch, on the floor, in his bed, in our bed, in his high chair, in the bath, in church, in the pram, in the car, at our friend’s house, at the shop…

Matt has reflux problems – this means the food from his tummy sometimes comes back up his oesophagus. Add to this a sensitive gag reflex. And the result: VOMITS! When the reflux tickles the back of his throat he starts coughing, gagging and inevitably vomiting. And when he starts vomiting he can’t stop until he has cleared his tummy. When he has a cold, where the flem causes coughing, then the vomiting worsens.

Little Matt is a real fighter. You can see that he is uncomfortable during the vomiting, but afterwards he just gets on with life – playing, eating (again!), sleeping – whatever he was up to before the vomit happened.

Some days it really gets me down, especially as we are concerned about Matt’s weight. Other days its fine, we just get on with cleaning up the mess and feeding again.

I have found that one way of coping with an ongoing problem like this is to focus more on the vomit-free days, than on the vomit days. So in our house a vomit-free day is like a birthday or Christmas – greatly anticipated and greatly celebrated!