Friday, 4 May 2012

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.


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.


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

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.

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").

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.

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 ......
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.

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...........


Tuesday, 1 May 2012

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.

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 ???


Monday, 30 April 2012

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.