From happy to sad

Hello everyone,

Last night I wanted to write about something that happened with Amelia but did not think it appropriate to rain on Tom's parade.

So here goes.....

While Scott was cleaning up after dinner last night, I began the nightly ritual of preparing Amelia for the shower. I need to undress her and assist her to the shower chair and then personally shower her. Scott then comes and dries her and puts her PJ's on.

Last night brought the usual stumbles and lack of balance. The swaying and sometimes falls are standard.

But last night something happened that broke my heart.
Amelia began crying.
She said angrily "I hate A-T. I wish I didn't have it. I just want to be normal".
She said it over and over again.
Scott came down and all we could do was hug her.
Hug her and tell her it is ok to feel like that.

We have not heard her say it for a very long time.
We have not seen this frustration, sadness and anger in ages.

We let her cry and let out all of the pain from within.
What else could we do?

Another extract from the book.......

The colic did not take long to begin. The night after we come home from hospital actually. Horrible screaming and arching of her back. This little baby was in so much pain and no one was able to stop it happening. The memories of standing in her room and rocking her. Holding her against me and trying to soothe whatever was causing so much pain. Scott would go to bed and struggle to imagine how the baby and I would survive the night. Mentally, I would take myself to another world and just switch off from the actual one. I could not put her down because I did not want her to suffer this alone. My role as her mother was to protect her and that did not mean placing this tiny body in a cot and walking away. “It will stop soon” the doctors kept saying

At 4 months of age it did stop. I will remember the day forever. Amelia was lying on a triangular pillow on the floor. It was next to a window and the sun was shining in brightly on the room. As the daily jobs were now something that was my only life, I was busy around the house. In a moment “IT” happened and has never gone away. I walked past our baby and she arched her neck to look at me. As I looked into her eyes she gave me the biggest smile that melted my heart. My feet stopped and I sat beside her and began looking at her in a way that a mother should look at their child. Her eyes and her smile felt like a comfort liquid flowing all around my body. That is the day that I learnt the saying “I would die for you”.

 

xxx

Tom and his footy

Hello Everyone,

Last weekend Tom's football team "The Melbourne Demons" played in the usual weekly round of games.
They have faced a lot of controversy this year in regards to their bad form.
They have lost many games........miserably.
Comments like "going to watch a team play while Melbourne watches" has been standard.
Tom has even resorted to saying "I am just going to watch the demons get thrashed".

Last weekend was different.
They began the game the same as normal.
The difference last weekend was the demons kept up with the other team and even stayed ahead the whole way.
Very unusual.
It never happens.

This poor child watches his favourite team day in and day out and watches them lose.
He gets all of his fan gear on and goes to watch them lose alone.
Last week was different.
Second Quarter meant they were still in the lead and ....... OMG the third quarter was the same.
This is unheard of !!!!!!
Tom was in shock.
Scott was in shock.
He had chosen to join Tom and celebrate a lead for once.

At 10:17pm...... THEY WIN !!!!!
The Melbourne Demons actually won a game !!!!
Tom and Scott were bouncing around the lounge room hugging each other and high fiving.

My dad who has been a massive AFL fan (and primarily Essendon Bombers) supporter since the 1950's, apparently lept out of his own recliner and punched the air and cheered........for Tom.

Friends were sending messages and texting, just so happy for Tom.

All of these adults did not really care about that particular team, but that night meant everything to Tom.
Watching his game, the weekly ritual, was a massive surprise and brought great excitement to his little face.

Love my little man and all he brings to this family.

xxx

Disability Care Launch

Hello everyone,

Very big day today.
We had to drive our "little star" to Geelong.
That is about 90 minutes drive time for us.
After much complaining, from Tom, all week about attending we left him with my parents.
He is not well but dislikes any long drives since the car accident two years ago.

Go to the link below and read the third blog on the page (the bottom one).
It may explain our sons fear of driving now.

http://ameliasproject.blogspot.com.au/2011_07_10_archive.html

Anyway today Amelia, Scott and I drove to Geelong Town Hall.

When we arrived there were many people in a reasonable sized room.
One hour of speeches (lots of politicians patting themselves on the back) and one lady in control of the whole thing.
This one lady was just like you and I and was just so excited that something she had been advocating for has come to fruition. She kept throwing her hands up and excitedly saying "We did it".

There was no famous people (damn!) or TV cameras at our launch, they were in Newcastle, where Kevin Rudd was.
But some of the others on the commercial were at our launch.
It was an absolute pleasure meeting them and their families.

There was lots of  "free food" and I made sure I tried EVERYTHING !!

Have received some more interest about the book today.
I am up to the tenth chapter.

Speak Soon
Amanda
xxx

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
and
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!!!

xxx

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......

http://vimeo.com/35835631


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.

xxx

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!

http://www.disabilitycareaustralia.gov.au/disabilitycare-australia-one-big-difference-lots-lives

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 4^th 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.

 

xxx

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