Saturday, 2 March 2013


Obviously my point of view of many things has taken a different turn in recent years.
I am obviously drawn to different "quotes" and "points of view".
Subjects that are of interest to me NOW, not before.
Some of them I would of read and "moved on" in previous years.

Statements like "The Only Disability in Life is a Bad Attitude" has helped me parent Amelia in her everyday life.

Today Amelia said to me "I am just so happy at the moment" while laughing.
It made my day.
It made my year.
It is what I strive for.

No regrets at the end.

But recently I have been processing the life of a person with a disability.
What I mean by that is to try and understand the "important" parts of life and what makes life....... "happy".
Obviously the wants and needs of someone with a disability can be totally different than that of other people.

If the "real" wants and needs are impossible, then what can WE do to make their life unbelievably memorable.
I am not trying in any way to discredit anyone with a disability BUT I have been dreaming about ways that "able bodied/mind" people can contribute to another persons life.

I have been touched and imprinted by so many people in the last 2 years to remind me forever of a disabled persons capabilities.
But I am partly ashamed to admit that my thoughts were not so open before Amelia was diagnosed with Ataxia Telangiectasia.

My interpretation now does not just mean "accepting and including".

It means REALLY understanding the person thinking and understanding WITHIN the body that is different.

At Amelia's special school there is one little girl who has changed my thinking forever.

I was originally introduced to her because she has the same electric wheelchair that the staff wanted for Amelia.
I had to not only look at her wheelchair but also her communication device.

I looked at them.
I asked questions about them.
Then I looked at the child sitting amongst it all.
Lets call her "H".

She is 8 years old.

Her body was frozen still.

But her eyes moved.
They were looking at me.

I began having a basic conversation with her.
Her eyes moved and I saw something.
I saw comprehension.
I really, really felt like she was understanding what I was saying.
I thanked her for showing us her belongings and gave her a massive smile.
As we walked away I asked the therapist her "intellectual" capability.
"She is age-appropriate for any 8 year old. She has the same intellect capability for any 8 year old".

Broke my heart.

She is stuck in a body that does NOTHING and yet she thinks and understands like anyone else.

The difference that child has made on me is MASSIVE.

I live with Amelia.
I know her capabilities and always laugh when even close friends comment
"Did she just say that?" in shock disbelief.
I know that her intellect is age appropriate.......just slower to comprehend.

But "H" has shown me what I never would have understood before.
I was a stranger to this child and I have seen something special and different that I would never have understood before.
I felt she was communicating with me...........with only her eyes.

This Special School has opened my eyes and my mind to people that I would NEVER have understood to the depth that I do now.
Amelia's class last year AND this year blows me away.

I am ashamed of that.

Nobody would understand the extent of these disabilities and rare diseases unless they were forced to.........
or chose to. Many of the staff have no family connection with disability whatsoever.

I am partly proud of the fact that I have changed because of Amelia's diagnosis.
I am glad that I have changed.

It has opened a whole new world to me.

The difference in our 6 year old son, Tom, is probably the most obvious.

Recently I walked into a birthday party for 3 children.
Only one was disabled and had disabled friends.
The "able bodied" children ignored the disabled children.
Not rudely.
It was just like they were an obstacle in the way.
Which reminds me of the quote.......
"It is not sad having a disabled child.
It is sad having an "able bodied" child that does not WELCOME a disabled child".

The above quote points to the person that I WAS.
If they meet, if they interact, if they get to know...........
The world could be a very different place for a disabled person.

On the Summer holidays we also attended a BBQ with Amelia's classmates from the special school.
The SIBLINGS were treating the disabled children like they were anyone else.
They made allowances for their disability with such ease that it was not noticeable.
It was fascinating to watch.
I was very proud that day to include Tom in that "fold" of very tolerant and unique children.

I would ALWAYS be kind but I do not think I would socialise, play with and interact with someone who was "different".

I am extremely ashamed of this.

I am watching (with tears in my eyes) those adults and children who choose to accept Amelia as a PERSON.
Someone who understands and can respond with appropriate answers.

Recently a beautiful person came to discuss her upcoming wedding with Amelia, who is a flower girl.
She told Amelia that because the wedding is 22 months away, she thought that a "junior bridesmaid" is more suitable for Amelia.
Amelia enthusiastically agreed.

I naively told this special person to "choose" outfits and decisions for Amelia.
BUT Amelia knew exactly what she wanted and what procedure SHE wanted to follow.


This special person knew not only the importance of this occasion for Amelia but also her capability of decision making.

I was awoken the following morning with "Wake up mum. We have to go and find a headpiece for the wedding"'............. 22 months away !!

Recently I attended an assembly at the special school.
After the assembly had finished I turned around to see "H" staring at us.
"H. It is bus time. You better go to your bus sweety" I said.
She started her electric wheelchair up and drove off.
"Have a good weekend" I called out.
The people ( general visitors at the assembly) around me had no idea of the intellect that H has.
Thinking that they were being "nice" they began making baby noises to encourage her to continue to the bus stop.

I wanted to scream at them.
I wanted to scream "NO. Do not treat her like a baby. She is NOT a baby".

And then I realised.
How would they know?
If you do not have the interaction.....then how would you know?

This journey has opened my eyes to a whole new world.

Maybe this link will show you what I am thinking.....!/photo.php?v=498523730183299&set=vb.460958710606468&type=2&theater


Wednesday, 27 February 2013

A feel good story

I am so excited.

Below is a photo of another A-T child.
A-T is short for Ataxia Telangiectasia and is the same rare disease Amelia has.

Aaron lives in Newcastle, NSW, Australia.

He has a MASSIVE dream to meet Ellen DeGeneres.

Ellen arrives on our shores next month to host a series of shows for her program.

Brenda shared the photo below on Ellen's "official" page weeks ago.
It has been shared, liked and commented on tens of thousands of times.
The "trolls of the internet" even featured.

Yesterday the Newcastle Herald came to interview them.
Today, Aaron's mum Brenda, spoke on a local radio station highlighting Aaron's wish to meet Ellen.
(The overall exposure has created great awareness for Ataxia Telangiectasia).
The radio station, Newcastles NXFM, has now created a campaign asking people to make suggestions about how to get Ellen to Newcastle.
The suggestions are leaning towards local songwriters and musicians creating a song and then choregraph a "mass mob" video clip with Aaron in the middle.

Something that started so small is now becoming massive.

Do not be surprised if Ellen ends up going to Newcastle!!!!!

Go Brenda and Aaron.
(and the fact Ataxia Telangiectasia and BrAshA-T keep getting mentioned makes it EXTRA awesome to help in finding a cure).

If you believe......if you really truly believe......your wish CAN come true.
(especially when tens of thousands of people are helping you!!!)


Sunday, 24 February 2013

Lots of links and a MASSIVE request

It is with a very tired mind and body that I would like to try my best to articulate the following entry.
I have been working a lot over the last 2 weeks.
There are more weeks to come.
I am relieving for a very competent and wonderful person at endota.
My voice is the first one you hear if you ring the "support centre" (head office).
My day is spent completing and sending the many emails requesting "gift vouchers" from the endota website.
The two responsibilities mentioned above are just 2 amongst many duties.......but the main ones.

This suburban mum, (yes, with a disabled child), must also leave in the mornings and come home at night with a household STILL to run.
Washloads, Dishes, children to organise, food shop and house to clean.......outside of work hours.
I have a new respect for what you juggle.
And I only work/travel during school hours.
There is absolutely NO WAY I could work full time hours and have the kids "looked after".

Below is the link for the company I now work for

My travel time is currently 100 minutes per day so I will be very happy when they relocate the office to somewhere local in a few weeks time.

Amelia is still doing fabulously.
So happy, so content.
Unfortunately we had a horrible fall on Monday night that created bruises and grazes all over one side of her face and knee, but she has recovered and is still so happy....... YAY !!!!

For the first time in 3 years I am having to discipline her.
It is quite a shock when she does/says something inappropriate.
I quite often have to hide my giggles.
Amelia has definately got some spunk lately !!!

Recently I was shown a magnificent DVD made by The AT Children's Project in America.
I absolutely love it because it has the faces of AT kids that I am in regular contact with.
We are so lucky to have the Internet so that we can connect with so many around the world who are going through exactly the same as what we are.
The song is written by a young man with AT and sung by a well known American singer.
Have a look at the link below.......

The families are just like us.
People who have been handed this massive challenge and are now just REALLY trying to "live life".

In Australia we are also lucky to have our own organisation trying to find treatment, a cure.....ANYTHING.
The Melbourne Director of BrAshA-T recently made this very personal DVD to try and explain the heartache for everyone living with Ataxia Telangiectasia.

The following link shows a DVD made locally.

Finally I have a very huge request.

I would like you to read the flyer that I have posted below.
I would like for you to consider coming and joining Scott, Myself, Amelia and Tom at this very beautiful event.
A picnic and children's movie under the stars.

Amelia has Ataxia Telangiectasia.
So do approximately 35 other children in Australia.

All of us are people that could be your friend, neighbour or work colleague.
We are just "average, everyday" people.
But we have given birth (or adopted) the most magnificent children and have been told what no one wants to hear about their child.

Their life will be short.

The hope of treatment, cure.....ANYTHING is always there.

BrAshA-T are the only group in Australia that are trying to save our kids.

By attending this fun, supportive and humbling night, the purchase of your ticket/s will contribute to what we all HOPE is in our kids future....... A Cure.

Please let me know if you do plan to attend because I would love for you to sit with us.

Please read the flyer below and book your tickets online for Saturday 23rd March at Flagstaff Gardens in Melbourne.

And as always, please feel free to share this entry.