Read this today, about disabled children

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.

Mixed Emotions...

Well it's girlie's 3rd birthday today! I was so looking forward to this before diagnosis. Now it's here, I feel teary and emotional. It's hard knowing that she may have had her last "normal" birthday. We had another joint flare up yesterday, so we are now on four joints that are affected. Right ankle and knee, left wrist and a finger on her right hand.

Got hold of the consultant finally too. Her appointment is the 19th March. So another month before we know where we are going and how best to treat her condition. I understand that there are other children with it too, but seriously, over a month before she sees her consultant is a little extreme. Especially as she is on high doses of NSAIDS to try and reduce the amount of inflammation. As the new joint has flared, she's now on DOUBLE the recommended dose! And they expect me to keep her on that for a month?

 I don't know, I just feel so helpless as I don't know what to do to make this better. As a parent, that is what I am supposed to do. But it's now been taken out of my hands and I can't do a great deal about it. This is going to be a very drawn out process and the idea that it could get worse is scary!

Happy Birthday Baby Girl, Mummy loves you no matter what!

Introduction

Hi and welcome to the blog!

I decided to start this as it would give me a place to jot down all the feelings and stress, so I don't end up exploding into some sort of emotional mess!

My daughter (2 years and 11 months) has just been diagnosed with JIA. Juvenile Idiopathic Arthritis. I never even realised kids could get it to be honest. So to have this heaped onto us was a big deal. It's still early days yet so we have no idea of what it is going to hold for her in the future.

Waiting on an appointment with a Consultant in Rheumatology to get a better idea of what is going to happen, how to treat it and whether it will be long term or not.

So this is just the start of a long journey for us!