The GALA night Report

Last night was the Brashat Melbourne Gala Night.

Amelia's Project was fortunate to have 5 tables there to support the research, into Ataxia Telangiectasia, that is happening in Brisbane.

Scott and I proudly sat with new friends, old friends, family and friends of friends.

None of you HAD to come.
But you did.

Formal clothing needed to purchased, babysitters had to be organised, transport needed to get there and get home........and for many....accomodation booked.

And today, nurse a hangover !! (alcohol was included in the ticket price).

So many people have supported us this year on our "new pathway".
Last night was another experience to remind us that people care.
Thank you.

The room was spectacular.
Stunning.
There was 380 people in the room learning about A-T and the new research being discovered.
The food was plentiful and the alcohol in abundance.
And the speeches..........
Inspiring, hopeful and sad.
The DVD...........cut deep.

Hopefully a large amount of money was raised last night.

But, overall, it was a room full of people coming together to help a small group of children survive longer than what we were all individually told on the day of diagnosis..............

xxx

THE Gala Night

Outfit - check.
Outfit shortened - check.
Hair - Check.
Nails - check.
Lots of donations - check.

All ready for tomorrow night !!!

Speak to everyone Sunday.

xxx

The Gala Night this Saturday ........

This Saturday night is The Melbourne Gala night for Brashat.
It will be the first one that we are attending.
We are so very fortunate to have 4 tables attending from Amelia's Project.
It is a MASSIVE ask and I am very grateful to all of those people that are making a huge effort to join us.

But the biggest thing I am so excited about is the speeches.
So many of you have been so saddened and so supportive of Amelia's disease.
But on Saturday night everyone will hear the amazing work that is being done to find treatment or a cure.

Reading and researching on the Internet is nothing compared to hearing these amazing people speak.
I cannot wait to hear them again.
I cannot wait for YOU to hear them speak.
I cannot wait to watch the HOPE emotion take over you, like it did me.

The answers may not be found in Amelia's lifetime, but after listening to everyone speak, you will walk away thinking ...........maybe it can be.

xxx

A Very Happy BLOG ........

What a wonderful day !!!!!

It began with huge smiles from Amelia.
For the first time in a while she was really happy.
And it continued after school right up until bedtime.

It may be the fact her OT has taught her a new technique for getting dressed each day (she has not been able to do it for about 10 months). The last 3 mornings she has been so proud of herself succeeding each morning.

Or maybe the letter she wrote to another AT child last night.
She spoke of crying if you are sad, being happy and having fun.
Maybe through writing this she reminded herself to smile.

Or possibly the "real mermaid" we found on FB last night. She has her own FB page.
She has a beautiful tail and swims like she is a real mermaid.
Amelia watched her video's and saw her talk and was captivated.
So we sent her a email.
We asked her wherabouts in Los Angeles (where she moved to from Byron Bay) in the time that we are visiting.
For years I have watched Amelia throw a coin into wishing wells and blow birthday candles while wishing to BE or SEE a real mermaid.
Hopefully she is doing a show or appearance somewhere, when we are there.

Having Amelia so happy today has made a HUGE difference to my day.

And Tom, as usual, has been very entertaining.
Today our house was "The Block".
Tom had paintbrushes, hammers and a large blackboard.
He is amazing to watch when his creativity and imagination are in overdrive.

And finally, Scott is home and getting a little bit better each day.

So, I will go to bed very content tonight with this feeling of happiness.........

xxx

Moving on......

Scott FINALLY came home from hospital yesterday.
A 5 1/2 day stay.
As he arrived home (thankyou Russell for getting him), I was walking out the door.
Both kids had Birthday parties to attend.
He is still getting better, but at least he can do it from home now.

I am looking forward to not trying to work out when we can go to the hospital each day.

The beginning of the week was difficult.
The kids were very emotional, especially when we had to say goodbye to Scott each time.

Amelia had 3 appointments on Wednesday.
I had my MRI for Breast cancer (precautionary measure) on Thursday.
And then throw in a school meeting.
Finally I had to find an outfit for the Brashat Gala next weekend.

So a busy week.

But I am very proud to say that by the end of it both children were very happy.
So I must have done something right.

I cannot describe how I feel when Amelia comes out of class at the end of the day with a big smile on her face.
Normally it is a face of tiredness and concentration.
At the end of this week it was a big smile.

Tom has been full of conversation and loving cuddles.

They are both now very happy to have their daddy home.

Someone asked me yesterday "are you excited about Disneyland?".
Without appearing negative, I actually have not had time in the last few weeks to sit back and think about it, let alone get excited.
As we all sit in front of an open fire today, maybe I will let my mind wander to imagine and dream about the adventure in 8 weeks time.
(while enjoying the beautiful cuddles our children are giving out in bucket loads at the moment)....

xxx

Roll with the punches......

There is something to be said about the heading above.
When you are living it anyway.

Recently I have been really struggling to stay afloat.
Amelia's A-T diagnosis,  Tom's stitches, the car crash and now Scott in hospital.

It gets to a certain point where you just get up and do what you have to do for the day.

Today, for example, Amelia had 3 appointments, Scott needed me to bring items up to the hospital, Tom needed picking up and the children needed to see their father.

Do you know how nice it was to get home at 5pm to my neighbour across the road walking over with a fully cooked lasagna ??!!
I had just bought a crappy quiche from the bakery to stick in the oven for the kids and I.
After she left, I could have cried with relief.

Thank you for all the beautiful messages of love and support.

I am fine.
Please do not be worried about me.

We will get through this (and the next thing and the one after that etc etc etc !).

______________________________________________________________________________

On a happier note.......
I finally purchased all the tickets to the Brashat Gala Night that I needed to.
We have 4 tables attending.
Now to find myself an outfit......

We leave for the most magical place on earth in 8 WEEKS !!!

AND ....... We are going to see Breaking Dawn at the Midnight release !!!!!
All 20 tickets ....... SOLD !!!!

Alright tomorrow I will spend the day smiling, even if I have to fake it.....lol

xxx

My house is spotless.....

Most people have something they like to do when they are stressed.
For me, I clean the house.
And I mean REALLY clean the house.
At the moment our house is the cleanest it has been in a long time.

All weekend Scott has been fighting an infection.
Last week he developed an abcess (sp?).
By Saturday he had a reaction like when a breastfeeding mother gets mastitis.
Shivering, fever, extremely tired and no appetite.

He spent the last 3 days on a intrevenous drip each morning.
But last night the abcess burst.
Today he was admitted to hospital.

Scott will now be on a constant drip and hopefully kill the infection.
He is in hospital for a few days.

Unfortunately I believe in karma.
But I cannot remember what we have done to deserve this much pain and grief.

xxx