Wednesday, May 18, 2011

"the only thing I want...."

Earlier this week the 2 kids, 2 pumps and myself had to travel to Melbourne. The 2 dogs had to stay at home.

The purpose of our trip was to meet with a Commonwealth Government Minister as part of a campaign to try to have vital changes made to current legislation regarding the Carer Allowance for children with Type 1 Diabetes. There is currently a review in progress and I will post all about it once the review has been complete - or more likely, before the review is complete - but right at the moment I'm way too tired to even think about it so I'll just write about this part of the story.

The meeting was very emotional and confronting for the 2 kids. Yes, they live with T1D, day in, day out - and they hate it, but that's just the way things are so they get on with it. They know the "bad stuff" about this disease and, yes, it frightens them - but they do their best not to think about it too much.

The 2 kids are Youth Ambassadors for the JDRF, part of their job is to take part in these kinds of meetings to provide a human face to the issues at hand.

However, it's tough for these kids to sit through a meeting like that and hearing their parents talking about the "bad stuff" to other people.

Of course, we sent the kids out of the conference room when we needed to talk to the Minister about the REALLY bad stuff - the kids know about it of course, but they didn't need to hear it the way we needed to tell it.

Once the meeting was over the 2 kids were emotionally drained and feeling very raw and vulnerable.

I decided to take them on a bit of a shopping trip to find them something nice - not bribery, just a "thank you" for coming to the meeting and doing such a great job.

My son was very flat and feeling ill. I was at the point where I just wanted to see a smile on his face. We spotted a huge music store and I knew the sight of a room full of beautiful guitars would cheer him up. And I was right - the guitar he dreams about was there! He never thought he would actually see one in person! A Gibson Les Paul Custom (I think - I have NO idea). The guitar was more than $6,000!!! But it was beautiful.

My son said to me, "I know, I can sell my insulin pump and go back on needles - then I can get the guitar!"

Hmmmm - interesting idea.

Needless to say, we did NOT buy the guitar - nor did we sell his insulin pump!

As for my little girl - well, she wandered around the big Myer department store - what an amazing place! I asked her over and over again if she saw anything she liked. Each time she sighed and said, "no, they don't have what I want."

Whenever she said this I asked, "Well, please tell me what you want - so that maybe I can ask someone if they have it or if there is somewhere we can get it?" She just shrugged her shoulders and kept wandering around aimlessly.

Eventually, after we had been through this about half a dozen times she came up to me and quietly stuck a folded piece of paper in my pocket.

She had written a note on the paper for me.

The note said:

"I don't want to tell you what I want because I don't want to make you sad or upset. But since you keep asking now I have to tell you so that you will stop asking. The only thing I want is a cure."

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