Thursday, 13 December 2012


I think I have ADHD.
No offence to anyone that does or has a child with this condition, but I genuinely cannot stop at the moment.

I cannot stop moving.
I cannot stop thinking.

Many of you remember when I set up my "Fairy Stardust" business.
For 6 months, I researched, wrotes many notes, ordered business cards and began basic advertising.
It was fun while it lasted and gave us some extra money.
(I dressed up as a fairy and entertained children at parties etc).

Now after beginning work at endota and ABSOLUTELY loving it, someone has suggested that I consider setting up a motivational/inspirational talk with visual aids (eg powerpoint).
I could advertise to give talks at conferences etc.

Public speaking has never been a problem for me when it comes to nerves.
My entries on here have more than enough information to create a speech.

Please let me know what you think of this idea, constructive criticism and ideas are very welcome.

This week, I have worked 14 hours at endota.
The office is bright and uplifting.
People talk, smile and laugh.
You are "forced" to rest and take a break (because I am only working 4 hours a day, I argue it is not needed for me).
The employees are happy and positive.
Someone is always offering to go and get coffees from next door and I have already come home with two "presents".

While preparing gift vouchers today for Christmas orders, I found myself thinking about the 2 girls that originally established this company.
Two girls that were my friends at school.
As I looked around the office, I found myself feeling a massive sense of admiration.
Two "normal" girls that have created this amazing business that has franchises all over Australia.
I found myself feeling so proud of them and all that they have achieved.

Amelia has announced that she does not like me working.
"You should be staying home and looking after the animals" she said when I asked her "why?".
I have ensured that the hours do not interfere with either child at all.
10am - 2pm means that I am here when they go to school and also when they return.
The house may be a mess and I may only have dry biscuits to eat, but I am still personally here for them like I always have been.
Upon further discussion we realise Amelia considers me her stability.
Possibly with her deterioration, my constant presence is comforting to her.
Her relationship with Scott and Tom is just as strong and beneficial but she finds comfort knowing that I am always at home.

It is hard to explain to a child that staying at home and doing the same tasks every day, every week......over and over and over can become quite lonely.
The dishwasher, tidying the house, clothing washloads can become depressing.
I have been home every day for 4 years.
A lot of my friends would LOVE to do what I do.
.........And this is where the ADHD comes into it.
Over the last few years I have kept myself busy.
My positive feelings have been created from organising the house, seeing friends, cooking and even writing this blog.
Now I have been given the chance to be in a new environment that is happy, really happy.
I am recieving compliments and praise.
Two years ago I decided to devote myself to Amelia (and Scott and Tom).
The realisation that I would never work again hurt but Amelia was more important than anything else in the world and I wanted to enjoy every single moment with her.
But now I have been given the chance to work during hours that no one is at home with me......

I feel really good (and am going to sign off now because I am waffling!!).


Monday, 10 December 2012

Two years and our "Happy Place".

Today is the day that marks two years since we first heard the words " Ataxia Telangiectasia".

The exact day that we were told to "go home and cherish every moment with your daughter".
"She is NOT dying" they argued but "she will be lucky to survive to 20 years of age".

I will never forget that day.
The entire week living at our Royal Childrens Hospital was horrific enough, but that day is part of me now.......forever.

Scott HAD to come in for a formal meeting.

They had found something in all of Amelia's traumatic tests.

I was able to get some information before the meeting..........
 "It is not treatable and there is no cure".

That day was the most horrible day that I will ever encounter.

Many, many of you on here were with me......with us.
Not only in spirit but also online.......waiting.
Waiting to hear why part of her brain was missing.
Why she was deteriorating.

How I drove Amelia home safely that day, I will never know.
How I was able to see through the tears while driving still confuses me.

That is a turning point in our lives.

Not a small one.
A VERY big one.

In the past two years so much has happened.
So very, very much.

Through these "blogs" you have travelled this journey of sadness, devastation, happiness and enlightenment (and not in a religious sense).
You have all celebrated Amelia's achievements and helplessness.
You have witnessed her intelligence and profound statements.

2 years.

Two years of learning that everything can change in a minute.

A normal life can suddenly become one that is sacred.

Amelia has gone from someone that walked out of the hospital that someone who can no longer walk "one step" without full support.
Two years ago she was walking (and running) around with AFO's (plastic leg supports) on her lower legs.
Now she needs a wheelchair.....constantly.

Two people are needed to shower Amelia, one to toilet her and one to assist her do anything else.

We featured in a newspaper, magazine and on television.

Amelia's Project was established and gala nights and numerous fundraising events eventuated from this.

Many of you have told me stories about how Amelia has changed your lives.
The photo's, the laminated drawings, the positive quotes.
Items that you have kept to remind you that everyone is entitled to an "amazing life".
Your own realisation that life can change....or end, quickly.

We travelled to Disneyland in America and were able to convert a van, suitable for an electric wheelchair to drive into.
The bank account also leaves us enough money to pay for therapists for at least another two years.

We are very lucky.
But we are also not...........

Recently we embarked on a new journey.

"No regrets at the end" will be the name of my novel.
Many of these "blogs" will be part of my motivational speech.

A few months ago it was time for a new pathway.
Amelia will always have Ataxia Telangiectasia, but our whole family needed to approach our lives differently.

Amelia deserves an "amazing life"....but so do Scott, Tom and I.

Negative was replaced with positive.

Many things I am unable to mention here but there is also some things I can.....

Scott has lost 24 kg.
I have lost 14 kg.
Amelia is now at Special School full time.
Everything has fallen into place for 6 year old Tom.
Tom is mature beyond his years, extremely clever (yes. I am biased) and very tolerant with Amelia's extra needs.
Amelia has become confident, demanding and opinionated. She argues with me and gives me a list of demands constantly.
Scott and I are a lot more energetic, positive ........... and happy.

I can genuinely say that we are all the happiest we have been in a very long time.

As someone said to us recently "You are in a really, realy happy place right now".

Today as I drove to my first work day at endota day spa head office, I had tears in my eyes.
They were tears created by nerves.
I then experienced the most wonderful, positive and powerful day.
On the way home I had genuine tears....of happiness.

Many of you will be shocked to know that I actually wore "fashionable" clothes!
A black, knee high dress.
Knee high black boots.
A slim fitting black jacket to the waist and......
a silk scarf around my neck.
Yes friends, I went all out !!!
(maybe make up next time!).
This suburban chick drove 1 hour into the city, had to actually find the suburb of Hawthorn and eagerly worked 4 hours.

Later in the day I recieved the comment that I was "extremely enthusiastic".
Personally I know that I had verbal diarrhea.
I was very, very nervous and excited !!!
But I will accept extremely enthusiastic !

I answered phones, handled emails, printed gift voucher emails, studied the products and began researching my future endeavor....the child care centre.
After a very informative talk with the endota "legal" representative, I feel extremely confident to begin the many pages of paperwork to ensure this happens quickly.

When I returned to my  "home environment" the enthusiasm from Amelia and Tom was just as enjoyable.
"How was work mum?" , "What did you do mum?" , "Was it fun mum?".

And as I finish this very looooong entry, I would like to tell you about Amelia's new wish.

Her favorite movie is "A Dolphin Tale".
It is a true story about a dolphin in America that is found in the sea with a fishing net wrapped aroung it's tail.
The dolphin conservation centre in Florida "rescue" it and regrettably have to remove the dolphin's tail to save it's life.
They named it Winter.
The pressure on it's spine, with no tail to swim, means that it is doing irreparable damage to Winter's spine.
A doctor fitting prosthetic limbs to army soldiers, makes a prosthetic tail for Winter (after many attempts).

Winter has her own website, webcam and long line of disabled people coming to meet her.

Amelia WANTS to meet her.

So welcome to my new goal for Amelia.
In 2014, I aim to get Amelia to Florida to meet Winter the dolphin.
We will most likely contact "Make a Wish" about this.

Tom on the other hand was very disgruntled that Amelia gets to "Make a Wish" and he does not.

Hoping for a happy ending I said to Tom "Ok. What is your wish and I will try to make it come true".

Excitedly he rubbed his hands together and said "To one day drink as much Pepsi Max and Powerade as I like".

I think we can make that wish come true !!