Friday, 21 June 2013

Special news.

Hello everyone,

Tom's 7th birthday party was awesome on the weekend.
We went go carting at the only place in our home state that catered for children of his age.

The go carts were smaller than normal ones and went at a very safe and reasonable speed.

For $20 per child they were able to do approximately 20 minutes of driving.
Also included in this price was the choice of any drink from the café and a large hot dog.

Our little hoon !!!!!

Today Amelia and I attended an appointment at our Royal Children's Hospital.

Because of "My Book" (lol), I only remembered the appointment at 3pm yesterday.

We drove up in silence because we SO did not want to go.
Both of us could not be bothered.
At least we had Chrissie Swan to entertain us on the radio!

The appointment was with the first doctor that I have encountered at that hospital that talks at a level Amelia totally understood. She had a friendly tone and constantly had eye contact with Amelia.
It was a pleasure to watch her interact with Amelia.

Afterwards Amelia wanted to go and find The Starlight Room.
This is a foundation that is set up separate from the hospital.
They have a room that children can go to and have fun.
The room had computers, play station 3 (with really big screens), art'n'craft and a camera where staff interact with children who are bed ridden within the hospital.

Anyway the staff (who behave like taking speed is part of the job description) start a "dance off" with children who are in the room.

Little Miss Self-conscious shakes her head and says "No Way".
We watched another little girl dancing and then decide it is time to leave.

As we are walking out Stage 2 of the "dance off" begins.

Psy and his GANGNAM STYLE comes over the PA System.
No conversation was needed between Amelia and I.
I turned the wheelchair around and took her to where the staff were standing (the speed for them had obviously just kicked in).
Amelia started off slowly, started laughing hysterically and that was it.
Amelia danced her heart out for all those sick children stuck in their beds !!!!!!!

She was told afterwards that she had won (she was the only one!) and was handed a ticket for 2 adults and 2 children to go and see Descpicable Me 2.


Finally some news.......

The other night I received a phone call from Canberra.
It was NOT the Prime Minister !!
It was the lady who is in charge of Disability Care and is overseeing the launch campaign.
She rang me from her home the other night because she was "so excited".

"Next month we open disability care shops and offices in various places around Australia. We need a photo on the front of them. The entrance. The face of disability care. After much deliberation and many photo's of lots of different people involved in the campaign, we have decided to choose one of Amelia. Everyone just kept coming back to this particular one.  Could you please give your permission for the poster that I have sent you via email".

See below what was sent.

You can imagine what my reply was.


Wednesday, 19 June 2013

I am writing a book !!!!

Happy 7th Birthday to the biggest Melbourne Demons Supporter in the whole of Australia, Mr Tom Nicholds!
Have an awesome day and thank you for coming into our lives and showing us that life can be exciting and fun.

Now here is some other news.....

Out of the mouths of babes.......

Yesterday morning I picked up the 3 gorgeous little girls that I take to school every morning
(they then bring Tom home for me).

"We saw the ad last night on facebook. Mum showed us" the child in grade 3 says.
"Excellent. What did you think?" I said.
"Awesome. Amelia is definitely the best. She was so good" was her response.
Then she looked at me with a frown on her face.
"But you just......sit there. You do nothing but just sit there". she says.
"I know. I was not allowed to talk" I say trying not to laugh"" .
She then starts laughing at me and now shaking her head she says louder "But you just sat there!".


Scott rings from the city yesterday and we have a short conversation.
At the end, I say "I have to go. I am writing a novel".
He laughed.
"What? I am! I'm serious" I say.
"I know. That is why I am laughing" he says and laughs back at me !!!

While out the front, my neighbours asked me how I was.
"Great thanks. I am writing a book!".
They just looked at me.
Poor people did not know what to say or where to look.


Yesterday I had to hurry home from the shops because chapter 1 suddenly appeared in my head.
I typed for 3 hours and ended up with 10 pages.
Approximately 15 people have "read" my rough draft after I requested honest opinions for the line of writing I have chosen.
Below are some of the comments I have got so far.........

Honestly... You are the strongest person I know! To relive each detail must be so excruciating, I can barely see through my tears. Very well written... a couple of spelling mistakes, but the flow and the focus on Amelia is really great.

So far so good, easy to read.

I kept looking down at the pages 'wow 23 pages' page 1-2, page 3-4.. so in other words I didn't have my full focus [too excited]... but then something happened. I was finished... I got that engrossed, it sucked me in. I just wanted more & more. I even made the 'nawww' sound. Was disappointed that it stopped so suddenly. How could I go from page 4 to 23 so fast??
The only thing is I didn't feel it was from you. I loved it & wanted more but if it didn't have your name to it, I wouldn't think it was from the same person that wrote the blogs.
The story was a great read, don't get me wrong, it sucked me in but not the same way as your blogs. I LOVE your blogs. I feel emotion from them, I FEEL them. They make me laugh, cry & make me feel like I have known you, Scott, Amelia & Tom for years.

Have just read your “book” and couldn’t put it down… at times I was close to tears for what you are going thru and wanting to know what the next step was you were doing.
Perhaps elaborate a bit more on things rather than point form.  I know you need to start somewhere but from what I have just read I wouldn’t be able to put it down. It really made me feel was going thru it with you….
Can’t wait to read the next Chapter

So thank you to everyone that has responded so far.
Lots to think about and work on.
Your responses have been invaluable.

Now I need to go.



Monday, 17 June 2013

High Hopes

I did not sleep last night.
Well not much anyway.

The excitement of the commercial had me on a high.
The messages about children pointing at the TV and yelling "There's Amelia" excitedly was fantastic.
People that are on this journey with us, crying, to see her do so well.
The happiness radiates off her in that one short scene.

But I cannot dispose of the idea of turning this blog into a book.

I sat up until midnight researching HOW you would do it.

The way the blog is in it's current form would not be suitable for book form, so I could not stop thinking about how to tie each entry together.
I was mentally scripting an introduction and an overall message or theme.

As usual, I rang Belinda and annoyed her with my ideas.
(I am sure that she sometimes switches off to me and goes into the automatic "yes Amanda" response!).
She is now helping me turn each blog entry into PDF form.

The thing Is, I have absolutely no idea where to begin.
The ideas of what I want to do are at combustion point in my brain, but I DO NOT KNOW WHERE TO BEGIN!!!!!

My thoughts keep returning to the beginning of our journey and how I could never have imagined all of the exciting things that have happened to us then.
I KNOW it is only because Amelia is very ill.
I KNOW it has all come about because of a very negative reason.
But I also believe in "working with what you have".

When something bad happens,
You have 3 choices.
1. You can either let it define you.
2. Let it destroy you......OR YOU
3. Can let it strengthen you.

I want to tell our story to the world and possibly help strengthen others.

How is writing a book going to be any different to everything else that has happened on our journey?

I also have another reason to embark on this new endeavour........

Scott is no longer working.
The reasons cannot be discussed, especially on here.
(Confidentiality and I need to have a chat.....what exactly are their expectations of me ???).
But I want to start bringing in the household income.
I want a House Husband !!!!
I now also want Scott to have the quality time with Amelia and Tom that I have been so lucky to have.
No Regrets at the end....remember?
Well, that includes Scott as well.

I really want you all to get excited with me.
You have joined us in so many exciting (lets put aside all the sad times) adventures so far.
I would LOVE you all to join me in establishing a book called "An Amazing Life".

If anyone has any contacts or knows the process of doing such a thing please let me know.

THEN I will begin researching the guest speaking circuit !!!!!!!!

Reach for the stars people, reach for the stars...
Please get excited with me.


Sunday, 16 June 2013

THE Commercial !!!!!!

WOW, WOW and WOW !!!!!

Late yesterday I received a phone call to say that the commercial would begin on nationwide Television today (Sunday 16th June 2013).

Last week it was late night TV on a Sunday, today it was early morning TV ..... on a Sunday!

Once again FB was fantastic.
We have not witnessed it on TV yet but due to awesome people in FB land we have a direct link to you tube.

So very, very happy with the footage (or Take!) they chose of Amelia and I.

Many people would understand the effort that went into Amelia speaking so clearly.
A beautiful speech therapist taught Amelia to 1. swallow 2. take a breath 3. talk.

The result is what you see on the commercial.

So, so proud of Amelia.

Amelia is also extremely happy with the end result.
She was more excited about seeing her friend, Michael, on television than seeing herself !!!!!

I am also happy to hear that 10 year old's all over town are now apparently talking about "I knew her when"!!!!!!!!

Some photo's and then the commercial.

My neighbour thought she was HILARIOUS hiding behind a bush out the front of my house taking photo's !!!!!!

The day of filming.

And finally a link to the actual commercial.

So happy to share Amelia to the whole of Australia and on here......the world.