Thursday, 15 March 2012

Turn that frown upside down.

Tonight Tom had basketball training.
He has joined a team through the school and is in a Grade 1 team (even though he is in Prep).

Amelia saw a lot of her friends at the basketball stadium.
Most of them are in her class at "mainstream" school this year.
Amelia's friends were waiting for their training session to start.
They were running around, giggling and playing with their basketballs.
Amelia was trying to join in whilst sitting in her wheelchair.

I was watching Tom practice (and constantly giving me a thumbs up!), while also trying to watch Amelia who had gone out into the foyer.

I noticed that Amelia's "friends" had gone outside and were playing on the concrete.
Amelia was sitting just back from the doorway, still inside, watching them (still in her wheelchair she is able to roll the wheels to move it).
Trying to watch Tom, because this is essentially "his time", while keeping an eye on her was becoming difficult.

The picture of her staring out at them began pulling at my emotions.
Her back was facing me.
I could not see her face.

Eventually I thought "I really need to go and see how she is".

I walked over and looked at her face.
Tears were streaming down her cheeks.
I instantly hugged her and asked what she was feeling.

"I just want to play with them. I just want to play LIKE them".

Now I was fighting back tears as she sobbed.

Tonight we have talked about "happy thoughts instead of bad/sad thoughts".
You can replace every negative thought with a positive one.
We have also spoken about how crying real tears gets all of the sadness and badness out of our thoughts and leaves all of the good ones behind.
I made her laugh when I told her I would need to wash her clothes now because they are covered in sad thoughts !!!

My ultimate dream is that "they" find treatment or a cure for A-T soon.
They claim that they are getting closer and have organised 3 major conferences in 2012 alone with researchers and clinicians world wide.
One has already happened in India in February, another will be in London in June and another in America in September.
I am regularly speaking to people that have lived with the A-T diagnosis in their family for many years.
They say that this year is the first time they have ever been excited and had hope.

One organisation in Australia is helping fund this research.
They will also be funding drug trials that Amelia will be a part of.
The first world wide drug trial will hopefully be this year.

For $10 you can become a member and contribute to this potentially life saving organisation.

If you can afford $10 please follow the link. Scroll down to donation and type $10 on this totally secure payment website.

You never know it may save Amelia's life and allow her to play with her friends.


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