Thursday, 26 September 2013

Where has the amazing life gone? Oh yeah A-T has taken it away.

(The following blog is depressing. But I am ok. Just sorting through feelings xxx)

Mountains are not moving at the moment.
I am trying in our quest for an amazing life but they are holding firm.

I do not know what pathway my writing is going to take tonight but I am hoping that it will give me some clarity and focus.

Amelia is not happy.
She is bored, grumpy, angry and sad.
She is cuddly, affectionate and wants one to one attention constantly.

It is hard.
Really hard.

One minute she is happy and then she is not.

We try to involve and introduce activities but they only end up, once again, showing her what she can no longer do.

Everything is getting harder.
To dress her, to move her and even the ability to fall asleep.

She has really taken to Scott being the house husband, so I know it is not because of that.

She is 10 now.
Time is passing by too quick.

We also have a 7 year old son that is a handful and also wonderful.
His feelings, thoughts and grief need to be handled daily too.
Neither child knows the real diagnosis of A-T and I wonder how long that can be the case.

Recently I returned from a day at work.
I ventured into the backyard to say hi to Tom.
He was running all over the backyard by himself playing a footy game.
"What are you doing?" I asked.
"Playing a charity game" he answered.
"What for?" I asked.
"All the players and fans had to give money to make Amelia's A-T go away" he said happily.

My heart just broke.

A 7 year old is not meant to be thinking and worrying about stuff like that.

Amelia does not want us to talk or mention her A-T.
She only wants to talk about "happy" things.

After telling Scott the other night that she "hates her life", I thought I would try a new approach.
I spoke to her about only getting one life and no matter what your circumstances you need to make it the best it can be.
"What makes you happy?" I asked.
"When I see butterflies, smiley faces and love hearts, it makes me smile" she said.

I guess my printer is going to use a lot of ink now!

I thought I may also set up a "pen pal" type program for her and other A-T kids of a similar age around the world.
It may be fun to get pictures, photo's and information from other places.
Talk to someone who is also wheelchair bound.

Then the usual happens.
I will need to do it all for her.
It is so frustrating for her.

Intellectually she is not affected.
Only struggling and failing at things she used to be able to do.

We had to say goodbye to someone from our lives recently.
They did not die, but we discovered just how frightened and sad Amelia was when around them.
When they did not stop the teasing and sarcasm, after we asked them to, we had to make the move away.

Other people no longer match what we need to be surrounded by.

Some people just do not realise that we cannot associate with people who bring negativity, secrets and nastiness into our lives anymore.

The two gala nights held for us is what we need.
Not the money.............. but the love, the friends, the fun and 250 people in a room wanting to create a better life for a little girl.
I can honestly say that I have bottled my feelings from those two evenings.
When I am feeling alone in our battle I take a deep breath and pretend to breathe in those feelings and take myself back to those two nights.
It makes me feel stronger.

I understand that Amelia is approaching puberty but I do not think any of us can handle the moodiness mixed with her frustration and sadness about her disease.

I have cleaned all week, I have researched teaching ideas.......
anything to distract my mind.
Amelia needs rest and downtime after a busy term 3.
But she does not know what to do.

Today I read, on Facebook, about a 5 year old boy being buried by his mother.
The harsh reality for so many parents.

Yesterday someone said to me "you will be fine. God is good".
In my world, in my REAL world, there is no god.
If there is, he is not a nice person.

xxx

Wednesday, 25 September 2013

The harsh reality of A-T

video
video

We are struggling with Amelia "hating my life".
Above is footage taken in 2010 and 12 months ago.

She is unable to walk unassisted now.
I will post more when I have the emotional energy.

She is 10 years old.

There are no words.

To the friends and family that have stuck by us......Thank you.

xxx