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.

AWESOME !!!!!




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.

xxx

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.
Hmmmmmmmm.
"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!".

Funny.

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.

Funny.

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.

I AM WRITING A BOOK !!!!!!

xxx

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.

So..........
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.

xxx

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.

http://www.youtube.com/watch?v=UeBFzmMDsxQ&feature=share

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

xxx

TAKE 2 !!!!!!

Well that had to be the biggest Anti-Climax I have ever experienced !!!!

So much excitement and anticipation for Amelia's commercial........and it never happened !

The commentary on Facebook was hilarious.

People ALL OVER Australia watching advertisements for once !!!!

I ended up having no interest in my usual Sunday night programs, instead sitting on the edge of the couch eagerly watching every commercial !
I had to move my laptop to my actual lap so I could respond to everyone !

Anyway today I rang them.
Last week I received an email asking permission to interview me about Amelia's disability.
I rang the number today at the bottom of that email.

It WAS meant to start last Sunday but due to some procedure that had not been completed, it could not run.

THE COMMERCIAL WILL DEFINATELY RUN THIS SUNDAY 16TH JUNE !!!!!!!

I cannot wait to share my Sunday night with you all again !
Put it on your calendar, in your diary or like me a big note on the fridge !

After she mentioned how wonderful the commercial is, I just had to ask.......

"You know the footage with Amelia, (pink top and in her wheelchair,) is she by herself or with her mother ?????".

"Amelia is definitely with her mother, YOU, in her small part on the commercial".

CRAP.

xxx

In this together

Tonight the commercial goes to air.....Australia wide on every channel......apparently.

The excitement generated all around us is contagious, to say the least.

It has made me quite reflective today.
It reminds me of what people following this blog, following the Amelia's Project page and following my own personal page have traveled through with us.

For many it began with the hospital visit.
The day that the diagnosis was given I felt the hundreds of people sitting there in that room with Scott and I.
For some it may have been knowledge absorbed and then a continuation of the daily activities.
For others......well you fell apart like we did.

The anticipation of the release of the Herald-Sun article in January 2011 and the Take 5 article a month later only helped finalise that Amelia had a very rare disease.
There was no treatment or cure.

The emotions you all displayed alongside us was overwhelming.

I was consoling people at the supermarket.

People no longer knew how to approach me and begin a conversation.

The dedication to get me onto the TV show "The Circle" was unbelievable.
It was commented on during the interview how many of you had written to them, asking for me to be on it.

I will never forget leaving that TV studio and turning my phone on.
My phone had the standard "honk" sound for text message.
It honked approximately 160 times.

People told me about setting up televisions in their work tea rooms, rushing home from school drop off and then begging Belinda for a link.

If you were unable to attend our first Amelia's Project Gala Night you sat online waiting for any kind of "report".
You were as astounded as us when Cindy stood up to the microphone at near midnight and said "we just passed $50,000 for the night".

When we left on the trip of a lifetime to Disneyland you eagerly read my daily blogs and saw photos of us at "the happiest place on earth".

You rejoiced in us returning to the most beautiful and adaptable bathrooms for a child with a disability.
You joined us in being forever grateful to Mark, Jen and the large team of "helpers" that created these magnificent rooms for us.

You have cried with us.
You have celebrated with us.
You have put up with my "rants" and at times meltdowns.

Why?
Because she is a little girl.
Because she does not have the life comparable to other girls her age, YOU have all helped me to move mountains to make sure that she has the most amazing life.

I think we have all done a wonderful job so far.
The people that have assisted me in making sure Tom lives life normally have made sure it is not just about Amelia.

I have two very happy children.
Two children full of spunk, attitude and who love life.

Tonight I will be sitting and watching House Husbands and waiting for our commercial to come on.
I cannot wait for you all to join me......yet again.

xxx

A mind airing

Hello everyone.

This is a post late at night......for me anyway.
But one that I need to have.
I need to clear my mind.
Some may agree, some may not.
That is also the general "gist" of this post.

I have had many conversations with many different people recently.
Some good people and some bad people.

How can you tell the difference?
Many ways.

Your gut tells you first.
The emotion tells you next.
And finally the decision on whether you want to continue with this person in your life.

Amelia, Tom and Scott will be in my life for a very long time.
People that I choose to join us is crucial to the overall happiness of Amelia's short life here and Tom's upbringing to make him the best person he can be.

Recently I was told that I am someone that "people come to".
I agree with that but not in a egotistical kind of way (well I hope not anyway).

Based on what I know and what I have been told, I would like to say something..........

Listen, give advice and support.
Do not give up on that person until it is detrimental to you or your family's well being.

I am surrounded by people with many different mental health issues.
Jeez.......I am sure that I could create my own new diagnosis that no one has ever heard of !!!!!!

DO NOT BE SCARED OF MENTAL HEALTH PATIENTS.

You will probably be surprised by how much alike they are to you and I.
They have just been brave enough to admit their thoughts to a medical professional.

I am proud of those around me.

If you need to seek help.....do it.
It is not such a bad thing.

Every, single person is so different to the next.
They bring such a diverse personality, ideas and thought process.
It can either extend our own lives positively or destroy it negatively.

The world has changed and all of the chemicals in our brains work so differently between each individual.
Never, ever be ashamed of the person you are.
Everyone can make changes for the better.

Always here.......for anyone.

xxx