This Week......

This blog entry will appear all over the place, just like the week we have just had really...........

So many times I go to devote an entry to thanking someone, ask for assistance in fundraising or give links to all of the equipment we are ordering AND THEN other information clouds my thinking.
I have absolutely NO idea whether anyone is coming to Macca's or August 4th.
Could be quite funny Scott and I sitting there by ourselves.

This week I was absolutely devastated about the loss of Jared.
So I began "organising the house".
(I put " " on those words because it is a massive job).
I needed to keep busy and recently I placed a "rule" (another big job!) on myself.

NO SITTING DOWN IN FRONT OF THE FIRE WATCHING TV, (while the kids are at school), UNTIL THE HOUSE IS COMPLETE.

By complete I mean whole rooms, cupboards, draws and filing cabinets organised, tidied and neat.

I was really disappointed with myself last term that NOTHING was achieved.
I have been living in "clutter" while I played with my children at home, now there is no excuse.

After I began, Scott came home from the doctors after mentioning some recent symptoms, and said the doctor had mentioned the big C word.
Lots of tests this week.

So now I found myself quitting smoking, grieving for an A-T loss and stressing about Scott's test results.
(Not to mention other things happening in my life that I cannot mention on here-something about Privacy. I do not know what that is).

I am now extremely proud of my achievement this week.
Amelia and Tom's bedrooms are unlike they have ever been.
Toys, ornaments and pictures they have outgrown are now out of there.
We discovered that our study actually has a floor and you can actually pack the cupboards so that the door shuts.
The filing cabinet has filled the recycling bin and there is also a pile (knee high) to burn in our fire.
Our front lounge room is no longer full of anything that we have dumped as soon as we walk in the door over the last 12 months.

I have been ruthless and strict.
I have been working like a machine.
At the end of the day my feet are swollen and my back hurts.

Next week I begin the other rooms and outside.

I WILL BECOME A LAZY HOUSEWIFE 1 DAY A WEEK (AT LEAST) IF IT IS THE LAST BLOODY THING I DO !!!!
I WANT A DAMN FIRE AND TIME FOR MEEEEEEEE !!

So after I have completed the massive demand I have put on myself, maybe I will.

NEXT.......
To brighten up my week, the kids and I were in hysterics on Wednesday morning when Amelia's special school bus arrived at 8:20am.
Our happy (but not very clever) dog started this high pitched happy bark and ran to tell us it was here.
We could not stop laughing.
The kids and I decided to take him out to meet Mr Wonderful (the name the bus driver likes to be called). I have never seen the dog so excited.
Mr Wonderful PUT HIM ON THE BUS !!!!
The kids already on the bus were so excited and Tom and I were laughing for ages afterwards.
Something so basic and it cheered us all up for the entire day.

NEXT.......
Watching Tom adapt to reading and writing puts a massive smile on my face.
I am so proud of this child.
Tonight it brought home a picture of his family.
He wrote all of our names which blew me away.
BUT Scott was written Sgot.
Say SCOTT and that is how it sounds !!!
Love it.
He has also realised that we got the fish tank almost 12 months ago.
So Tom has decided that we need "furniture" for the winner of survivors birthday.
Personally I do not understand why "Herman" (the only fish to survive from 15) needs a king size bed or ensuite but Tom's room design does look good.
(Anyone living in Australia watching The Block at the moment will understand his "jargon").

NEXT......
I think Amelia is hitting puberty.
She whinges, complains and is grumpy 95% of the time.
When I have to help her do so very much it is very difficult when she is "telling me off" all of the time.
But then suddenly she will be laughing hysterically and full of energy.
I think I may need to buy a helmet for when I am near her.
It was fantastic to hear the bus driver show great enthusiasm the other day to "finally" hear her speak.
Apparently he started talking about "the magpies" (Collingwood football team) and Amelia started loudly "booing" him and then realised what she was doing and started hysterically laughing.
Mr Wonderful was visibly very happy when they arrived here.

NEXT......
My car was assessed for repair.
It is booked in and I will be without it for a week.
That is going to be very hard.

NEXT ....
Electric wheelchair ordered $17,000 ($10,000 out of pocket).
Car being ordered on Monday $47,000 (minus $23,000 for Scott's car).
Car Conversion booked for in 3 months $37,000 ($27,000 out of pocket).
Stressed? why would we be?
Shouldn't we just be dealing with the fact we have an 8 year old with a Terminal illness?
Of course not.
Lets see how far we can push you.
Can Amanda be pushed to breaking point?
Lets make it a game !!!

Today I almost achieved it.
Yay !!!!!!
Who wins ?????

NEXT ......
Everyone knows how much Scott means to me.
After laughing to myself throughout this entire blog, I now begin to cry.
His symptoms at the beginning of the week pointed to cancer.
His HEAVY cigarette smoking points to cancer.
His diabetes etc etc etc etc ......
OMG.
I prepared myself for him to face a battle.
The statement "it will not happen to us" no longer applies to this family.
ANYTHING can happen to this family.
Today my thoughts were racing (high anxiety).
My vision was blurred (high anxiety).
I started sobbing (high anxiety).
I went out to lunch with gorgeous people and had difficulty socialising (some people would say I had seriously lost the plot).
TODAY was Scott's test result day.
I was a mess.

RESULT ?
All tests negative and diabetes at an all time low.
And there are no new battles to confront.
Just Scott's stress.
But hey shouldn't we all join that queue ???!!!!!

There is so much more from this week but lets just leave it at that for now...........

xxx

The good, bad and the ugly.

My brain is so full of information, thoughts, concerns and decisions at the moment.
There are also many positive thoughts floating around in there.

Scott and Tom were involved in a car accident on the weekend.
An older lady "did not notice" that everyone had stopped at the traffic lights.
She ran straight into the back of my car at 60km/hr.
Her car is a "write off".
Mine has minimal damage at the back (considering the force and damage to her car).
Thank you to the lifesaving X-Trail once again.

Ramifications?
Tom has been in another decent car accident.
Two in 7 months!
The kids and I will be without a car while it is being repaired.

Amelia is deteriorating much faster at the moment.
Her walker is no longer keeping her safely upright all of the time.

The falls are becoming more frequent and the bruises more obvious.

She does not feel confident in walking around our house anymore.
Amelia will call me so that I can "escort" her to another room.

For the first time EVER, I am beginning to struggle understanding her speech.
It used to be everyone else.......not her mum.

BUT the smiles, laughter and quick wit have increased.
I am not used to Amelia coming home from a full day at school... having energy.
During a recent 4pm phone call with my dad he asked me who's children had come over.
It was just Amelia and Tom hysterically laughing and playing.

There are many situations in my life at the moment that I cannot discuss on here.
I would not be the only person facing such struggles and I know of many that are experiencing much worse right now.

But one issue that has been concerning me recently has finally been addressed.

My gorgeous husband, Scott, has lost a lot of weight in the last few weeks.
9kg in 8 weeks to be exact.
There are also other issues I have been concerned about to do with Scott's health.
Tonight he went to the doctors and had 6 viles of blood taken for testing.
He also has referals for other tests.

I am sure that he will be fine and all of the tests will come back negative.

Nothing else can possibly happen to our family.....can it ???

xxx

R.I.P. Jared Digby

I cannot possibly explain how I am feeling tonight.

A young man that was a central member of the A-T family passed away a few short hours ago.

The way his mother announced it is beautiful.

"Jared Digby ran into heaven at 10:27"
(Texas time).

He fought this horrible genetic disease and survived till 29 years of age in this world.
A magnificent age for someone with A-T.

May you fly high Jared.
Pam, I hope that I have your strength in the future.

xxx

Our beautiful bathrooms

Hello everyone.

I hope you are all having an amazing weekend.

This blog is one I should have published months ago.

The people mentioned below built our beautiful "disability friendly" bathrooms for Amelia.

I have copied and pasted most of the email from Mark O'Dea (the organiser of the whole operation) because his words sound better than mine.

I cannot possibly express my appreciation enough to all of these people.

If you ever need a tradesman at work or home please consider contacting one of these very kind men.

I will be mentioning more people and businesses next week.

There is A LOT happening here at the moment.

I am absolutely exhausted but achieving lots.

xxx

Hi Amanda

I would like to forward all the tradesmens details who worked on your property to make it happen, they are great guys & put their time in for free as well as supplied the materials required to carry out the works. Jack and aaron really bent over backwards with the work they carried out so I give them top marks for their efforts. Enjoy your bathrooms

Carpenters

Josh avenell (French and sawdust)

Dale van der blur(French and sawdust)

Richard Palamara   (French and sawdust)

David Mccoy   (French and sawdust)

Electrician  

Aaron murphy(murphy electrical) 

Plumbing

Jack Begbie (Begbie plumbing)   

Plastering

Hartley Swarbrick (acme plastering)  

Bricklayer

John Harvey (polar brickwork) 

Tiling

Paul Barlow (lifestiles)  

Supplies

Tait timber and hardware Somerville. c/o Richard 

Rubbish removal

Moorabbin bin hire

Much Thanks.

Mark O'Dea

French And Sawdust Pty Ltd

Email  mark@frenchandsawdust.com.au

Home extensions: www.frenchandsawdust.com.au

Decking Works: www.deckking.com.au

Lessons in life

Sometimes I will write a blog that no one has any idea why.
A blog about something or someone that I feel has been a "lesson" to me in life.

Every person in this world is on their own "journey".
Their personality, choices and impression to others is their own.

As a person who likes to analyse, reflect and learn I regularly admit to mistakes.

While travelling on my journey I am concious of the person I would like to be.
The choices that I make reflect who I am.

On Friday night I made a choice that I am not proud of.
Actually I am ashamed of.

An extremely popular and well loved teacher at the school had a bad accident on the holidays.
The school were asked not to reveal all the details.

I did.

After talking to this wonderful man last week I decided he needed positive messages to help him get through his long recovery ahead.

I didn't just tell 1 person, I set up a group on FB.

It circulated like "wild fire".

The messages were beautiful about a man who inspires and treats everyone with great respect.

But it also created some distress and grief for many.

My disregard for what he and his family may think of this page is inappropriate.
What may have begun as innocent support should have been thought about more.

After a weekend of nausea and shaking I will take this lesson and learn greatly from it.

I have always listened to people and supported them through their hardships.
I feel like my "character" has a great big dent in it now.

As much as we all adore this man and the way he makes all of our children feel so very special and loved..........It was never my choice to tell.

Get better soon Mr Barnes.
We look forward to seeing you back at school very soon.

Project Manager

At the moment I feel like a project manager.
There are many projects on the go around me and I am trying my best to handle them all.

Lindsey (our OT from Scope) and Martin (Anglicare) are currently handling one major project beautifully.
Today handrails were installed at the two back doors.
Our health carers will be returning to also put one at the front door and beside the toilet.
Soon ramps will be installed at all entry/exits of the house.
ALL fully funded.
They are also enquiring about bath seats.
At the moment I lift Amelia into the bath (all 48 kg of her - she is pure muscle and doughnuts).
So hopefully we will find something to assist us soon.

The electric wheelchair was chosen yesterday - TICK !!
(When it arrives we will have to look at moving a lot of furniture if she needs to use it at home).
Quote due to arrive any minute.
But it will be more expensive than the price of a small brand new car.

New car, almost decided.
The $41,000 Kia Grand Carnival or $46,000 one.
(we get a fleet price because it is going to be converted).
We will also get stamp duty back on it.

Car conversion.
Decided on Auto Mobility.
Quote due to arrive any minute.

Special school / Mainstream school hours decided.
Spoke to mainstream today about Amelia bringing her manual wheelchair each time and eating little bits more often......for energy.

Communication device needs to be chosen.
The Government fund $7000 towards it.
I am actually having to choose between one that is for communication only and one that is also a computer with wifi and bluetooth (the control on Amelia's motorised wheelchair would control the device OR she can use the touchscreen).
This would be mounted onto her new chair

McDonalds Night on May 22nd.

The Amelia Night on August 4th.

Making DVD'S about Amelia for the August night and to be circulated on the internet.

Am wondering if Amelia may need to do a "sleep study".
The quiet snoring and holding breath may need to be checked.

And Tom.
Yes I have another child who needs my time and attention too.

And my husband.
Happy Birthday for Sunday honey.

So after my previous blog, I have decided to "up the anti" so to speak.

This is from my shopping today.
I am very much looking forward to consuming it to help me continue as Project Manager.
(no scientists have responded to my "expressions of interest" yet).

Finally, I uploaded a video to our facebook page yesterday of Amelia driving an electric wheelchair.
A lot occurs on that page that does not get shown here.
If you are interested please join.


http://www.facebook.com/groups/ameliasproject/

xxx

Definately NO sarcasm.......

I have decided that I am a science experiment.

I am doing this for ALL humans.

In the past 12 months I have gained a massive amount of weight.
The effect on my life is worth documenting.

I lack energy and have trouble sleeping.
I snore (well so Scott says but he has no evidence to show me!).
I think exercise is an illness and is for people who are crazy.

My life is centred around emotional eating.

I LOVE EATING.......and I am very emotional, so it is perfect.

As part of the experiment I think scientists would be amazed with the amount of cellulite I have been able to create.

Next month is my 20 year High School Reunion.
(Yes I am old).

My goal after having children was to get myself back to a size 12 for the reunion.

NOT going to happen.

Amelia's diagnosis has made "my weight" seem so not important anymore.
To force myself into a diet and exercise program is pushing me towards failure at the moment.

So, I have decided I will tell my old school friends in 3 weeks time that I during a favor for everyone in society.

I am testing emotional eating to the full extent.

Now to go and find an outfit to cover up all this fat...........

xxx