Points Finale !!!! (Thank Goodness)

I am now bored with my "points"and will now be presenting the GRAND FINALE !!!!

It appears all "old news" to me now and I want to move on !!!!!

Scott has travelled through a more intense realisation of our current situation recently.
He is fine and not in the foetel position in the corner BUT the sadness of Amelia's deterioration has overwhelmed him on a few occasions recently.

We all have moments of realisation and they really hurt, but also get to the end of the tunnel and find sunlight....... until the next tunnel.

We have all really enjoyed the school holidays that have just ended.
Scott was working but enjoyed hearing the stories of our day (and happiness) when he came home.

And finally, Amelia's Project.
After an incredibly successful 20 months, Amelia's Project no longer has a Committee.

After creating a group so powerful and mind blowing, I told the Committee I wanted it to end now.

My energy needs to focus on Amelia and my family now.

We will be eternally thankful to Jemimah, Michelle, Cindy, Belinda and Donna.
They all worked so very hard to help our daughter, and effectively us, and there is never going to be a way to thank them enough.

Belinda and Donna now oversee the Amelia's Project bank account and I give them any receipts we have accumulated.

At this stage there will be no more active fundraising for Amelia's Project.

In the future this may change, but for now we are so humbled by what was achieved and the love and friendship that surrounded us over an incredible 20 months.

I am very happy to say that THIS blog and the Amelia's Project page on facebook will continue.
I need my therapy through writing and respect your interest in hearing of our good and bad days.

xxx

Continuing the "Points"

Amelia has had 2 dangerous falls recently after just waking up.
The ability to get to our bedroom to assist her with the morning toilet stop is no longer safe.

We were advised to purchase a "monitor" from Toys'r'us that allows for two way communication.
It also has a camera on Amelia's end and a TV screen on our end.
Excellent for $160.

As well as being a "fun toy" for the kids it is also effective in making sure she does not get up alone.

A few weeks ago we had a fun wheelchair party to celebrate the arrival of the new wheelchair and the new car.
Some of our closest friends attended with their children.
Amelia admitted at the end of the night that she struggled to watch all of the children "playing".
Even though Scott and I felt like we had failed we understood that we needed to take this knowledge and remember it for the future.

Recently I had a discussion with Amelia about what to do when we get together with other people.
I explained that "she may have A-T but it does not mean she cannot find her own fun. The fact that she has it, is what it is, (harsh I know) and she needs to work with it so that she prepares and and can think up ideas for her own fun.
Take the dog to the park and be in charge of it.
Play chasey on the chair.
Tow kids on skateboards and rollerskates.
Get out a game that can be played at the table.
etc  etc etc etc.
Amelia (and us) need to think of ideas of activites she can participate in.
Scott and I are taking all the blame after so many situations seem to fail.
I want to put some responsibility back on her now.
Stopping and smelling the roses can open up so many doorways for happiness.

Now while moving down my points (about 3 entries ago) I would like to talk about Tom.
These holidays I have seem him hand feeding Amelia her toast because she has become too tired to do it herself (I was in the kitchen packing the dishwasher).
His patience has recently excelled (towards Amelia only) and nothing appears too annoying or difficult to help her with.
Tom is also realising that Amelia is someone he can still play with.
He has also realised that she laughs at his jokes !!!

Tom has an amazing ability to calculate number.
The adding up and subtracting he is able to achieve in his head is mind blowing.
He is also teaching himself the "times tables" ??!!
Amelia, Tom and I went to the movies today.
 He had a movie voucher to the value of $12.
Straight away he said
"You won't need to pay $36 now mum, just $24".
At the bakery when 2 loaves of bread came to $7.40, he saw Scott give a $10 note.
"You will get $2.60 change dad" he said before it had been calculated by the register.

Anyway as another School Holidays comes to an end, Scott and I are going to watch some favorite TV shows.

Have a good weekend everyone.

xxx

Evaluating my "POINTS"

Hello.
I cannot sleep, so I thought I would begin explaining my "points" from two entries ago!

I will begin with Amelia.
She cannot walk now unassisted, if she does she will always fall.
So Scott and I prefer to support her from behind, holding her underneath her arms.
If we just hold one side she seems to lose her balance and do a 180 degree fall.

I keep thinking she is grumpy in the new "motorised wheelchair".
The other day she informed me it is her "concentrating face"!

Amelia is either sad or grumpy A LOT when at home now.
I like hearing that she is not outside the home (ie school), well as far as I know anyway.

Amelia's "attitude" is also changing.
With frustration, anger and sadness being the new behaviours of late, we can also add attitude.

I have watched her kick Tom when he is walking past and drive her chair over his chalk drawing on the ground outside.
Both times this has followed with a small giggle while still looking straight ahead.

Recently while Tom was insisting she pass HIS motorised wheelchair test, she ran into our hallway wall for the upteenth time.
"Shit" I heard her say.
We then had a discussion about NEVER saying that word again.
That night as I was telling Scott about the incident, in front of Amelia,
she said quietly "Oh get over it".
Hmmmmmmm.

We are having lots of discussions about ways Amelia can communicate to anyone around her because her speech is rapidly diminishing.

There was obviously nothing wrong with her speech above was there ??!!!

We are also talking to Amelia about "Looking on the bright side of life", having fun, enjoying the sunshine and looking for the positives in general.

This anger and sadness is wearing Scott and I down greatly.

We feel like we are failing this responsibilty we have been given......

To give Amelia an amazing life.

Everything (well almost everything) we plan or organise for her ends up being a failure this year.
And I mean a failure to her, no one else.

We have been known in certain situations, that require no upset,
 to say to her "Oh get over it"..................................

Oh Damn, that is where she got it from.

Will continue the "points" another day.

xxx

Endota Spa

I am so incredibly excited right now, I think I will burst !!!!

(WARNING : The Me, Myself and I will continue during this entry!).

Endota Spa has offered ME a position at their Head Office.

It appears that they are one of those companies that is all about making their employees happy and logically, we all know, that means creating better profits and reputation.

The business name Google are known world-wide for making sure their employees set their own job description and work using only their strengths and positive energy.

Yesterday I was asked to request my hours, time unavailable and list my strengths.
Anyone that knows me knows I am not very good at promoting myself, so I named my "Degree in Early Childhood" and the fact that I am a "neat freak".

All of a sudden I am now setting up a "child care area" for the employee's children and supervising it DURING school hours and not school holidays.
I will also be assisting the receptionist with administration and "busy" times of year.
My position will commence around December 2012.

I AM SO EXCITED !!!

The affect this has had on my self esteem is unbelieveable.
Somebody actually wants ME !!!!

I do not care about the money.
I am 100% doing this for my sanity.

Thank you so much to everyone for all the supportive messages and encouragement after yesterdays entry. You have no idea how much it helped me stop shaking !!

Our whole house is excited about what happened only yesterday.

Today I have spent the afternoon writing a "Business Proposal" (does that sound business like ??!!) of ideas and suggestions for the new children's area.

After Amelia and Tom returned from school, I thought that I would get their input on what I had written.
I believe the transition has to be handled properly so that our whole family adapts smoothly.
As I read my ideas of room planning etc to the kids, I had to stop myself laughing.
Amelia told me I will need "ramps" incase there are any disabled children (and so she can visit!).
Tom said that he will tell his teacher that he "will need some days off so I can go and help mum supervise the children". He also said "I will teach them how to read and write".

So if you could all excuse me now, I need to go and list more of my strengths and finish my "business proposal" !!

Have a look at the Endota Spa website below too.

http://www.endotadayspa.com.au/home

xxx

Me and I

In the last few weeks I have encountered people that I do not normally see.
Whether it is because Tom is at school full time now or lack of contact it is always a pleasure to see these people again.
It is interesting when the first thing they say is
"You haven't written a blog for ages".
Interesting, because I do not realise how much people enjoy hearing about the kids, Amelia's A-T and my "warped" philosophy on life.
Sometimes I get messages asking "Is everything ok?" from all over the world.
People seem to feel a connection with our family and that is very humbling.
I write when I need to.
It can be for a positive reason or a negative.

Because I have taken a break from writing recently there are many things that I can write about.

I will list in point form what I would like to discuss over the coming days before I focus on todays "Topic" !!!

# Amelia - walking, wheelchair, car, attitude, swearing, bad fall and wheelchair party.
# Tom - Traffic lights, behaviour, footy, number and THE chop bone.
# Scott - realisation of everything Amelia and job insecurity.
# Amelia's Project - a few admin changes and plans for the future.

Some interesting discussions to look forward to.
(if it is easier to be emailed a blog once it is written just register to be a member done the right hand side of this blog. Then you do not miss anything !!!!! ).

Todays Topic - Amanda (that is me).

I am going for a job interview today.
To say I am nervous is an understatement.

I have not applied for it, a gorgeous girl from the last 20 year High School Reunion (I have been to 2 this year!) asked me to consider working for her.
I cannot tell you where BUT the business could be considered "famous"in Australia.

I thought about it for 48 hours and thought there is no harm in listening to what they are suggesting.

So now I am incredibly excited ....... and nervous.

I am excited at the thought of not constantly doing washloads, cleaning the house, cooking and packing the dishwasher.
I am excited about actually getting to leave the house and having another role.

I am not looking into it for the money, (even though it would be a godsend), I am considering it for my sanity.

The main obstacle will obviously be Amelia.
Sick days, curriculum days and school holidays would be "non working" days.

If nothing comes of it I am still very excited.
I have discovered that I want more from my "week" and that is something I can continue searching for.

So as I sign off from my "ME" and "I" blog, I say thank you so much for having an interest in our family and supporting us in trying to create an amazing life for not only Amelia, but for everyone.

Now to google the address and find something to wear !!!!!

xxx

Massive week

We have the car !!!
I do not know if it is a good thing yet
BUT
We have the car !!!!!

The reason for my hesitation is a lot has gone wrong since we left the car conversion place.
Because of the extremely strong winds yesterday, I found myself driving down East Link trying to avoid lots of debri flying across the road.
There was cardboard, metal, polysterene and I am sure I saw a frisbee !
Amelia and I heard sticks colliding with our brand new car and I wondered how the car would look by the time we got home.

Next I went to fill the car up with petrol.
I do not know what happened but the fuel pump did not "cut off"when it was full.
Petrol came flying out of the tank and covered me from head to toe.

Anyone want to light a match ??!!

Finally, taking Amelia to her old mainstream school this morning (so she could show off her new "wheels") and I was unable to unlock Amelia's wheelchair from the "docking station" on the floor.
Thank goodness for the inbuilt DVD player.
30 minutes I tried for until I organised to drive the 1 hour to get her released by the conversion company.

I must say their customer service skills are excellent in handling an angry woman !!

Anyway, I love the car.
The whole family loves the car.
I tell Amelia that she is sitting like a queen on a throne up the back.

When you turn around in the drivers seat you realise how BIG the car is.
Actually the kids and I are already calling it the BUS.
I made them sing "The Wheels on the Bus" on the way to school this morning (until they told me I was annoying them !).

At least I am guarenteed of a good laugh tonight.
Six year old Tom is in the school musical.
Last time we saw him on stage we were crying with laughter as his exhuberant personality shone through.

Lets hope tomorrow is quieter !!!

xxx

Something fun and funny

It is a wonderful pleasure to be able to share this exciting day with all of you.

I remember last year telling people the motorised wheelchair may be up to 5 years away for Amelias diagnosis of Ataxia Telangiectasia.

Due to the nature of this horrible disease, it was only 12 months later.

BUT the excitement leading up to today and the joy on Amelia's face was contagious.

Instead of waiting for someone to assist her in walking or for someone to push her manual wheelchair, she can move around all by herself.

The instructions for the chair were complicated and I found it difficult to remember but "Miss Smarty Pants" remembered it all !!!
As she began changing the speeds, tilting the seat backwards and pointing out items on the small control screen, I was the one saying "How did you do that ?" and ""How can you remember all that ?".

When the final fittings and adjustments were completed it was fantastic to see Amelia enter the playground.
The other children and staff members showed great excitement and interest in Amelia's chair.
She loved it.

As Amelia had fun "driving" around showing all the children her new "wheels", one of her friends approached me and questioned where we had got her "drink holder".
It is a very basic contraption that easily connects to any bar on the chair.
I explained to him that this one came on this chair but the one on her "old" chair was $20 in Mornington.
I explained that I had a spare one at home and I would give it to him when their "bus" brought Amelia home later that day.\

A few minutes later, I experienced this onslaught of wheelchairs driving towards me.
Amelia's friend was in the lead and pointing at me, "Amanda knows where to get drink holders" he was telling them excitedly.
I suddenly experienced a flashback of many years ago when a group of emu's ran at me at a wildlife park (Scott placed me in front of himself for protection, but that is a story for another day).

I had all of these happy, excited faces requesting drink holders for their own wheelchairs !!!!

So the PINK wheelchair is here and the fights have begun of who's turn it is to drive it !

I would like to finish with another story in the day and the life of our family.........

When I was at the reunion on Saturday, Scott took the kids for a fun afternoon at the park.
As he was assisting Amelia back into the car she accidently face planted the dashboard.
She now has a black eye.
Scott was extremely upset when they were telling me about what happened.
To make light of the situation I smiled at Amelia and suggested a story she could tell everyone at school on Monday.
On Monday night Scott asked Amelia what she told people when they asked her about the black eye.
"I told them daddy bashed me into the car" she said smiling.
I gasped and laughed so hard I had to hold onto the bench to stop myself falling to the ground!
I never thought she would actually say it , I was joking !!

Ten minutes later (while Scott was panicking about Human Services taking our daughter off us) Tom asked about the words in the song "We are young" .
He wanted to know "why someone would feel like falling down when the bar is closing. Why would someone need to carry you home".
While Scott chose the safe route of explaining someone may be "tired", I yelled out "it is because they have had too much grown up drink". (Bad move).
"YOU have grown up drink mum" answers MR 6 year old innocent.
(INSERT light bulb moment for Scott)
"Yes Tom" says Scott with great speed " and I would like you to tell your teacher tomorrow that mummy goes to the pub, falls down and has to get carried home !!!!!! ".

Payback is a bitch.

New car tomorrow.

xxx