Tuesday, 13 December 2011



In possibly my lifetime this will be the biggest 12 months I will EVER experience.

I do not think that I am exaggerating in making this statement.

Tonight, I can only write from MY point of view.
Not Scott's, Amelia's or Tom's.
Just mine.
I am the only one sitting and writing.

So I will begin a summary.......

On December 6th 2010, Amelia was admitted for an overnight visit to the Royal Children's Hospital.
Our concern for her recent decline in mobility and speech meant that her paediatrician wanted to run some tests.
The overnight visit became a 5 day visit.
Tests, trauma and lots of emotions followed.

December 10th 2010..... we were told Amelia did not have cerebral palsy (as thought for the previous 4 years) and all tests were pointing towards Ataxia Telangiectasia or A-T.

Scott and I questioned the 9 people in the room on what A-T was ...........
" a disease that eats away at the brain and immune system. She will be lucky to survive to 20".

Shock set in.
I will remember where I was sitting in that room forever more.

The uncontrollable sobbing lasted for days.

My FB friends, who had been through the whole diagnosis with us, began searching for help.
Nutrition, vitamins, research.......anything.

People came from all directions, but mainly online.
Many, many messages.
Many, many presents.
Lots and lots of meals.
I did not cook dinner for 5 weeks.
But I also couldn't.

Learning about A-T and accepting that your 7 year old daughter has it........well it is a very difficult process.
I think we will be processing it forever.

For many nights I lay awake.
I cried a lot.
But I discovered that writing my feelings on FB made it all a little bit easier.
By writing my thoughts, I worked through many difficult stages.
I was also able to sleep because it was like I had "got it out of my head".
I am still writing now.
It is theraputic.

My beautiful cousin set up this blog.
I transferred all of my documents over.
They are really hard to read.......very raw and emtional.
But also clearly show my shift from negative to positive.
Our appreciation and love for Amelia.
My opinion of what an "amazing life" can and should be.

Now, 10 months later, there are 158 posts.
It has been viewed over 21,000 times.

Our gorgeous Amelia still has A-T.
She will always have A-T.
But the change of perspective, the change of attitude has changed the way we treat every day.

We appreciate every smile, every giggle, every dance.

We hope that a cure will be found in her lifetime but we are also realistic that it may not be.
We will contribute as much as we can to finding a cure but will also make sure that she has the most amazing life in the time that she is here, if one is not found.

My motto : NO REGRETS.

I want no regrets.
I try my best every single day to have a smile, have fun and enjoy every single minute.

We can be proud of the lives that we are and have created for ourselves as well as our children.
Happy with the end result.

It is interesting how your whole world changes when you change your attitude.
I laugh when I remember my "petty whinging".

Nothing will ever, ever compare to Amelia's diagnosis.
We are just very lucky that we have been given time to make and create memories.
To love and cherish and appreciate.

I will never forget the phone calls, text messages and online support during this horrible time.
I will never forget lying in the very uncomfortable fold out bed at RCH holding Amelia's hand and wondering what the future had in store for us.
I will also never forget the strength that came from deep down within me to question any doctor that approached us and demand explanations and answers.

I began to learn that I was going to need to fight for Amelia and try to find some confidence to get her the very best of help........

.........to be continued tomorrow.............