Friday, 29 June 2007

Where shall we go on holiday?

How do you come to terms with something as big as bring a "little person" into the world? As usual, some one has said it better than me....

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.

© Emily Perl Kingsley 1987

Welcome to our blog!

My name is Andy Dungey and I live in the UK with my wife Clare. We're fairly normal people... I work with computers, Clare is a teacher. We live in a nice house and regular attend our local church. We have lots of lovely family and friends.... Such an idyllic picture!

Here is our baby at 12 weeks....

Isn't he lovely! Life was going totally to plan...until the 20 week scan. There were some unusual issues with him and we were referred to Addenbrookes in Cambridge. The scan revealed that our little boy will have a skeletal displaysia and although they can't be definite until he turns up, it's most likely Achondroplasia.

These are big words for a small problem...literally! Achondroplasia is dwarfism to you and I. They were fairly sure it's non-lethal but there was a cyst in his lung (called a CCAM) to contend with and maybe a club-foot! We would have to wait until the next scan to see how he's doing.

Well that scan has happened this week and, praise God, the little chap is doing really well! The CCAM seems to have disappeared and his chest is growing as it should so they are still saying the condition is non-lethal.

So, why create a blog? We're not after may be less than a month since the first sign that something was not quite right, but we're already coming to terms with the new course of our life. But, naturally when you find out something like this, you turn to the internet to get all the information you can. There's loads of US-based sites about dwarfism (see the top of our links section for an excellent blog in the States), but fewer in the UK.

So this is our purpose... to provide information about dwarfism and how to raise a "little person" in the UK.

We don't know what lies ahead, but we're sure that with God's help we can get through it. And as we find out useful information, we'll post it here so that when the next person gets the diagnosis that will change their life, we can hopefully put to rest some of their fears.

Happy reading!