Wednesday, 6 July 2011

Sometimes I believe there may be a chance of downtime....for a few days anyway.
But this week I decided to organize our passports and finalize our choice of hotels for America. The phrase "doing my head in" is something I have muttered many times in the past few days.
I have been able to find everyone's birth certificate, except....Amelia's !!
So today I drove for 2 hours to Melbourne to visit Births, Deaths and Marriages. Thankfully I got a very nice man who explained that our Marriage certificate is also not legitimate for a passport application. So I came home with a birth certificate for Amelia and the correct document for Scott and my marriage !
Very proud of myself for mastering a map and parking.........

Every night I have stayed up very late researching hotels for Los Angeles, Las Vegas and Hawaii.
It is a lot harder than I had anticipated.
And I think I am making it even harder on myself by wanting to book the best holiday ever.
But after lots of research over the last 4 nights we have finally settled on accommodation in LA and Las Vegas.
We leave in 3 months !!!

I think at this point I also need to acknowledge Tom.
For the past 10 days he has been good, and I mean really good.
Yesterday he said "I am much more lovable since I turned 5 years old".
Personally I think he may be maturing........for now!

And Amelia's vomit episode lasted only 2 hours.
She suddenly stood up and said "I'm starving", and has not vomited since.
The school holidays have definitely cheered up her sad mood of late (probably helps that Tom is being unusually nice to her at the moment!).
She has also received a lot of attention from lots of different people.

But when I was driving to the city today, drowning in my bad mood about having to go there, I received an email from the A-T families in America.
Sadly they informed us that a 10 year old boy died yesterday, over there, from A-T complications.
This has once again grounded me and reminded me of the REAL battle that all of us have been presented with.

So if you have a spare $100 and are free on Saturday 13th August, please consider coming to the Brashat Gala Night in North Carlton.
Your ticket cost will go towards finding treatment or a cure.
Please let me know if you would like to come and I will make sure that we all sit together.

Just a reminder that this BLOG is free to share on your homepage.
In the top left hand corner you will see links to some of the publicity we have been able to garner in the last 6 months.

Now I must find somewhere to stay in Hawaii..........


Sunday, 3 July 2011

So much to document.......but I do not know where to begin.

Firstly, my apologies for the delay in writing.
IT chicky has taken my computer away, to fix it, so I am now on Amelia's IPad.
Do not know why i did not think of this sooner.

I think part of my delay has also been finding MY life again.
The biggest 2 weeks (which ended up being 3 weeks with Tom's 5th Birthday) of my life ended and I was actually amazed that we all came out of it fairly unscathed.
So far, I have not fallen into a heap like everyone predicted.
Amelia's Project has opened so many doors for Ataxia Telangiectasia, community spirit and friendship. But it has also been grounding to sit back and remind myself who I am, what is important to me and just process what Amelia's Project has achieved.
I cannot believe how Amelia's Project has wound up the last 6 months.
With a National Television appearance, an Auction night that was AWESOME and today an article in a very well known magazine.
All in 6 months.
When you all began this group, I sat back and watched.....amazed.
At the time it actually made the processing of our beautiful daughter's prognosis that much harder. It is so much easier to give than receive. At the time you were giving so much love, support and time to organize something. No one knew what though.
Many of you will remember me saying "this group will become bigger than any of us ever imagined one day".
So many of you have done so much for us.
When we went to Brisbane, then I went on TV and we had the Auction Night (all in 6 days) the nine different people who cared for our children was hard. I have always been very guarded about who looked after our children. But that week, everyone who had our children, I trusted. A big step for me.

Now Amelia's Project will have the last meeting for 2011 in two weeks. (At least we think it is!!!).
Next year, everyone talks about starting it up again.
The demand for tables at next years Auction night is already huge !!!

But today, with my house back in order, washing up to date and family conversations over dinner again, I look forward to Disneyland.
I am trying so hard to contain my excitement because it is still a few months away.....BUT I cannot believe we will actually be going !!!!

And Amelia?
Well she reminds us everyday why we are doing this.
I do not need to say anymore than that ........