Thursday, 6 September 2012

Massive week

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


Tuesday, 4 September 2012

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.


Monday, 3 September 2012

D day

Tomorrow is D day (or pink motorised wheelchair day!!!).

At 9am tomorrow Amelia is having her brand new $17,000 pink wheelchair delivered to her Special School.

It is so exciting (escpecially her enthusiasm right now) but it is also another part of the journey for Scott and I.

You see, Amelia cannot walk now without us.
It is extremely unsafe.
She is falling out of bed each night.
She cannot toilet on her own or feed herself.

The kindness, quick wit and compassion is still there but she is very sad 50% of each day (and it is usually when we have her.......exhausted).
I think I will start looking into medication for her soon.

I can understand her frustration and sadness because I experience it daily too, but I put 100% into putting on a "happy face" and assisting her every minute she is back with us.
You see, because she is so "thoughtful" of others it would upset her greatly to know how much I struggle watching this happen.......24 hours a day / 7 days a week.

That is where these "blogs" help me release negative energy.
The people around me also have a massive impact on my overall demeanor.

Very difficult to watch someone lose all their "skills".

Anyway , back on track ........

Tomorrow the wheelchair AND Wednesday the car !!!!!!
Cannot wait.

I will have both children at the car conversion place for approximately 6 hours.
(Teachers strike at school for Tom).
Hopefully I can entertain the kids for that long!

On Saturday night we will be having a "Wheelchair Party" to celebrate it's arrival.
What began with just one family attending, is now at about 10 families !!!!

Amelia is excited to proudly "show off " her chair.

Last weekend I attended my second 20 year reunion for high school (yes I went to 2 high schools).
I thought it may be difficult considering I left there with "no friends" (consider an anxious teenage brain, in Target clothes rather than Esprit and Cherrylane!).
I felt alone on many occasions for 2 years.
Once again teenage brain.

Anyway , back on track AGAIN.......

I had an awesome time.
I came home from the BBQ and told Scott everyone was going to the pub.
He said "get in the car. The kids and I will take you. You need time to be YOU".

I am extremely grateful to him, because I had a GREAT time.
Difficult being hungover on Fathers Day BUT still a great time.

In a way I feel like I have "settled" a personal memory.

Probably helps that I am a different person now.

I still complain daily about my weight gain, but I also do not give a shit about "friendship anxiety" now.

So as I go and get ready for dinner I leave you with a conversation I had with Tom today.
TOM: You are the best mum.
ME : Thank you ..... considering I am your only mum ??!!
TOM : Oh yes but I am comparing you to all my friends mum's.

WTF ??!!!

Do not forget the Amelia's Project page on Facebook.
These blogs are only ever posted there.