Ataxia Telangiectasia

Amelia has Ataxia Telengiectasia.
It is degenerative which means it progressively gets worse.
The main signs are the loss of motor skills and speech.
Motor skills covers many areas:
chewing, swallowing, walking, balancing, co-ordination, talking, laughing, hand movement, eyesight, dressing, toileting, feeding...... putting one foot in front of the other.

Why do I mention this again?

Amelia has just turned 9 years old four days ago.
She has had two MAJOR falls this week.
One that should have taken out her front teeth or at least broken an arm.

Yesterday our family made a rule.
Scott, Tom, Amelia and I discussed that Amelia is no longer allowed to walk anywhere unsupervised.
Amelia was the one who asked for it.
This was after the second major fall and she screamed at me through her tears "why did you leave me alone?".
I will take the blame.
I did leave her alone.
Last week I left her alone to walk on numerous occasions and there were no falls.

This week something has changed.
Is it tiredness ?
I have been exceptionally tired this week.

I hope so.

Or is Amelia just closer to losing her motor skills forever ?

I know that many people all over the world read this blog everyday.
I see the audience statistics.
I see the countries where someone has read my entries.

Can we all help make a difference to this horrible genetic disease ?

Maybe .............

Research is finding answers and creating more questions.
Answers and questions that may lead towards a cure or treatment to improve quality of life.

This blog keeps everyone informed of Amelia's progress (decline) and also Tom's and mine.
(I do not feel it is my right to discuss Scott's thoughts).
We live and watch this everyday.
Yesterday after the second fall, Tom was extremely shaken and upset.

As well as directing awareness to A-T, I would also like to take this opportunity to provide links to the many organisations working tirelessly to help us.
They were all set up by families just like mine.
A few dollars towards these organisations goes a very long way.

Maybe one day I will surprise you with the news that they have found something.
Something to not only have Amelia walking again, but to also save her life..........

In Australia:
http://www.brashat.org.au/

In the UK:
http://www.atsociety.org.uk/

In America:
http://www.atcp.org/


xxx

Mental Health Days

Why is it that some people, (me being one), do not allow themselves time to just rest ?
I am lucky that I have a place to get away to in the city when everything becomes too much.
A place where I can just eat, drink, sleep, read and watch TV.
But I do not "allow" myself to do this in my own home.
Why ?

On Monday night, after Amelia's birthday celebrations, I collapsed in a heap.
Everyone had gone home or gone to bed and I found myself paralysed on the couch.
(And for those that know me too well, it was not due to alcohol!).
I actually lay there in great pain all over my body and feeling so exhausted in my head and could not work out how I was going to make it to bed.
Eventually I made it.

I realised in the 2 seconds before I fell asleep that I had pushed myself too hard this time.
I could not ever remember feeling this exhausted.
Is this how Amelia feels everyday?
This was only one moment in time for me but I realised this is probably how she feels at the end of everyday.

I decided while I lay there I would do something about it the next day.

So the day after, (yesterday) ,I decided to have a "mental health day".
My beautiful cousin taught me this term recently when she told she was having one.
It is for when you have been pushing the limits too far and you need to rejuvenate.

Yesterday I was incapable of doing anything anyway.
My whole body and mind had shut down.
Rather than try to fight it, I decided to allow myself 1 day.
If anyone had of visited they would have thought I had succumbed to depression.
At one stage I was walking around the house, (looking for Honey!), with a big blanket wrapped around my shoulders.
But I watched two movies.
ME !!!!
I can actually say that I have never sat and watched a movie during the day before.
It was almost like an "out of body experience".
My usual analytical thoughts took over later in the day and I realised how I had deprived myself of this time to just........be.
Honey and Scamp slept on top of me most of the day and I was able to watch two awesome movies.

So I think I have learnt something very important about myself now.
I am also very proud of myself for "allowing" myself to have such a wonderful day.

Now I have done lots of errands this morning, I have the fire going and I am going to watch a movie before school pick up.

Mental Health Days are awesome !!!!

xxx

Amelia's 9th Birthday

I currently have a daughter lying in bed.
It is late and she should be going to sleep.
But I am constantly hearing "mum, come here please".
When I arrive comments like "I can't wait" and "I am so excited" greet me.
You see tomorrow is a very special day in our house.
Tomorrow is June 4th.
Tomorrow is Amelia's 9th Birthday.

Thank you to our beautiful friends that came on Saturday for a quiet celebration.
It was a memorable experience that Amelia loved.

Amelia has already received her present from the whole family.
Honey our new puppy.
I can honestly say that she has fitted into our home and family extremely well.
She has also found a way into all of our hearts.
Honey is gentle and quiet with Amelia and has great fun running and playing with Tom.
There has been no crying for her siblings or distress overnight.

It is almost a spiritual calling (if you believe in that).
I saw her at the exact time that we were ready to welcome her.
Honey's personality and nature are perfect for what our family needs at this point in our lives.
And the final HAPPY straw is our other dog, Scamp, loves her.
He has a new lease on life.
He waits for her to wake up and plays excitedly.
Very happy with our decision.

Tomorrow there will be a few "necessary" presents (think One Direction !) and a special celebration at Amelia's special school.
We will finish with a family dinner.
Then I will begin the reinactment of Amelia's birth 9 years ago.
Tickets are $10.

(That last bit was a joke!).

This week I decided to take a short sabatical / hiatis from Facebook for a while.
I have logged out everywhere.
The account still exists, I just do not check it.
I love a good challenge and this definately began as one.
The first two days was like quitting smoking.
I was lost and didn't know what to do.
I was coming up with awesome status updates and only had myself to laugh at it !!
Now it is easy.
My reason for the challenge?
Recently there had had been disagreements that had been directed at me or that I became involved in.
I did not enjoy the side of me that obsessively argued back.
Other people can happily participate but that is not me anymore.
I do not need to waste my time defending myself or opinion over anything.
So if anyone wants to contact me email
snicholds2003@optusnet.com.au


Finally I would like to describe the way I was woken at 7am on this Sunday morning......

It was dark in the house.
Not a creature was stirring,
not even a mouse (or Honey, Scamp, Annie or Tessa!).
When a little 5 year old boy woke up.
He decided to turn on his mummy's phone to check the AFL footy scores from the night before.
(he has downloaded his own app from itunes!).
Poor little boy, his Melbourne Demon Footy Team has not won a game this season.
Yesterday they were 18th on the ladder.
That is last.
Last night they played the team 2nd on the ladder.
This morning I woke up to a VERY LOUD whisper.
"mum, mum, MUM. They won, they won".
I looked at the phone sympathetically thinking "he has read the numbers wrong. Melbourne couldn't beat Essendon".
But sure enough they had won by one goal.
Tom was sooooo happy ALL day.
And what a beautiful way to wake up.
Tomorrow it will be a little girl turning 9, so best I sleep.......

Goodnight.
xxx