Friday, 28 June 2013

Fresh Start

My mind, my thinking and my ideas are in overdrive at the moment.
My email account is overflowing with peoples thoughts on what I have written so far and publishers, editors and manuscript assessors replying to my questions.

Thank you to everyone that has been so incredibly helpful in the past fortnight. Your enthusiasm has been infectious.

As I said last night on Amelia's Project page on Facebook, it has been suggested that I need to make a business plan/prospect/outline.
Mine is quite simple.
1. Write book
2. Get it published
3. Have mixed media media appearances for release of book
4. Go on guest speaking circuit
5. Make lots of money to pay our house off.

That is not too much to ask is it?
I am determined to try my best and maybe I will succeed.
Amelia is with me for a reason, I really, honestly believe that.

The kids are also getting interested in what I am doing.
The CAN DO attitude is huge in this house right now.
Apparently Amelia and Tom are writing books themselves now!

So far I have learnt that writing a book is all consuming and is not easy.
I will also need my own marketing campaign (publisher or not) and push to sell my own book.
Sales and marketing will be new areas for me.

I will also need a good support network behind me and people actually interested in reading it.
I think I have that going by all the support I have been receiving from family, friends and members of Amelia's Project.

That is another thing.
Amelia's Project has changed in the last 10 months.
It is no longer a fundraising group trying to raise funds to support Amelia and her family.
It is now more a group that
1. Is raising awareness about Ataxia Telangiectasia.
2. Following a journey of a child's horrible diagnosis
3. Following the highs and the lows and enjoying the triumphs
4. Despite almost everything being negative in our situation ; looking on the bright side of life.

I am sure there are many more but that is all I can think of right now.

Next week the group on Facebook will change it's name. This blog will also change it's name. The photo's will be changed to more recent pictures of Amelia.

I would like the group and blog to be called "An Amazing Life".
That is what Amelia is having and is also reflecting on those around her.

I look forward to moving onwards and upwards with all that would like to join me.

The world is our oyster........

Now to get ready for the Kings arrival soon and I need to write more for the book!!!


Wednesday, 26 June 2013

The KING is coming !!!!

Good evening.

It would appear that we have a King staying here on Friday night.
The stress and anxiety coming from Amelia about the food we are going to eat and activities that I have to entertain the expected guest are constant.

The expected guest?
Amelia's soul mate Jackson!!!!

I cannot tell who is more excited though Amelia or our awesome school bus driver.
Bob picks Amelia up every morning and drops her home at the end of the school day.
He is a lot of fun and Amelia is slowly learning how to counteract his teasing.
When I asked his permission to bring Amelia AND Jackson home on Friday he was bouncing with excitement.
The teasing has already begun at school about Jackson needing lots of money to buy his ticket to get on Captain Bobby's bus.
This is a man who makes all of the children salute him before they board his bus!

Jackson is also wheelchair bound and attended a mainstream school before moving to the special school, just like Amelia. It is fascinating to watch them together and I look forward to enjoying time with both of them over the weekend.

This week we received Tom's grade 1 report for the half year. As expected his strengths are in maths, reading and writing. The beginning paragraph of the teachers notes started with "Tom is a very energetic child". That has to be the understatement of the year!!! Tonight we were fortunate to attend a meeting with his teacher where she could only give us positive comments about our son. So very, very proud of Tom and as I have said before, I am loving watching him grow up and show us the person that he is becoming.

Below I will include a link that I really hope you would consider watching. It is a video made of another family who has a child with A-T. I do not know them and have not heard of them in my network of A-T families worldwide. But every word and emotion is Scott and mine. The photos and faces could easily be replaced with Amelia's and ours and I would say it is our story. This video may help you understand what we think and feel and why I am so driven to write a book about our journey so far......

Finally the book.
The last 2 days have been spent writing about what could only be described as the worst days of my life. I needed to relive it to write about it. I am so drained emotionally and tired from writing about it but I hope that it is going to be worth it in the long run.

Here is another extract, something from yesterday.........

Three doctors from the neurology department arrived before Scott did. One sat on a chair directly facing Amelia. Two others stood either side of him. They were kind to Amelia. They began the usual exercises and added some new ones in. “Can your eyes please follow my finger Amelia. Can you touch my finger with your pointer finger” the doctor sitting down asked. Amelia giggled and thought it was great fun. The doctors were talking amongst themselves and one standing was taking notes. Suddenly something that was said in their private conversation caught my attention. All I had heard was “her MRI”. I immediately leant forward and said “Do you have the results from her MRI yesterday? What did it tell you?” I asked curiously. Very casually, with three other families in the room, the man sitting, looked at me and said “Part of her brain has disappeared when we compare it with the MRI in 2006”. My mind struggled to absorb everyone around us. I tried to let that information sink into the inner part of my brain, but it was too difficult to do. Part of her brain is gone? Just disappeared in 4 years? How does that happen? I was able to see one of “our doctors” at the nurse’s station outside our room. I walked over and looked at her my eyes begging for information. “If you lose brain cells, can you ever get them back?” I asked hoping for an answer different than what I knew. “No” was the only answer I received.


Monday, 24 June 2013

Serial Pest

Hello Everyone,

Very excited to tell you that Amelia and her family (that is Scott, Tom and I) have been invited to the Disability Care launch in Geelong next month. As Scott said "free food"!!!!!!!

In case you are new here or have been living in Iceland, the link below takes you to the Disability Care website that Amelia has featured in. Michael from her class is also in it. Press the link for the commercial to see Amelia. She is the gorgeous one in the pink top talking about getting a new wheelchair!

Apologies for the bombardment on Facebook and my entries here recently.
(cannot imagine how many people have limited their views of my updates!)

I need to get a lot of it off my mind. The excitement in recent weeks has been HUGE and as well as clearing my mind, it is also exciting to inform all of you.

I feel there has also been a major "shift" in the reason for Amelia's Project recently.
As I see some people move on from the group and others arrive, I AM STILL HERE.
Amelia is still here and Amelia still has Ataxia Telengiectasia.
Many of YOU are still here.

But with the commercial things have changed.
I can feel a change still happening in my bones (or maybe it is just me!).

Watch this space....

Finally I would like to show you an extract (that is writers talk, because I am now a writer! - sarcasm pun INTENDED) from my up and coming best seller called "An Amazing Life".

The baby’s heart rate began to rise. The Doctors and nurses approach anxiously looking at the monitors attached to me. They began talking amongst themselves and start using the phone in the room. They need to get it out NOW they said. Caesarean or cut you. Which way do YOU choose? “Get it out now, cut me” I answered naively.

The scissors, vacuum and forceps are used to get our baby out. At 10.33pm, on Wednesday 4th June 2003, the baby was born. Our baby. It is a girl.  A very white, messy little girl.  She is beautiful. I faint.

When I open my eyes again, I am handed what will be the most precious thing I will ever have. The baby does not cry. She does not make a sound. But her eyes are open wide. Very wide. She is staring at me as I try to absorb all of her beauty. As doctors, nurses and my parents move around the room talking and working, I hear nothing.
“What is her name?” someone asks. Scott and I look at each other and nod our heads. “Amelia Grace” Scott answers. And so begins Amelia’s life with us.

Little did I know, at the time, how much this child would shape and define the person that I would become. This child would change my beliefs, values and perception on life. Little did I know, this child was given to us as a precious gift and would personally reach out to so many people.