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

Honey

Today we added another member to the family.

For Amelia and Tom's birthdays (June 4th and 19th) Pa, Nana, Poppy, Great grandad Eric and Scott and I purchased the most adorable puppy.

After falling in love with it yesterday, I begged and pleaded that the children would love it.

They were going to get junk anyway that will never be played with so why not have something that is a constant companion.

I grew up with animals constantly in our house.
Cats, dogs, terripins and fish.
The cats and dogs became my best friends, cuddle toys at night and something that just with a pat down the back was an instant calmative.
The first cat mum and dad bought was 12 months before I was born.
I have extremely loving memories of Siam(cat), Tinkerbell(cat), Candy(dog), Tammy(dog), Sam(dog), Casey (cat) and Jordan (cat).
So as you can see my whole childhood always consisted of at least 2 cats and 1 dog.

I loved it.
So I want my children to be surrounded with animals too.
Animals do not argue, hurt your feelings or upset you.
They give you affection, loyalty and endless love and trust.
Animals teach children to be gentle, caring and kind.
They teach children responsibility and looking after someone who cannot look after themselves.

Family pets never let you feel lonely.

We have chosen a breed that we have never heard of before.
A GROODLE.
A cross between a Golden Retriever and a standard poodle.
Their name used to be Golden doodles.
Thank goodness they changed that name.
Could just see Tom going to school today and telling his teacher he has a Golden doodle !!!

After looking for a suitable pet for 7 months I think we may have finally found it.
I found 2 websites in Australia and the UK that described them as the new animal for people with disabilities.
They are described as highly intelligent,active and playful, do not shed hair and a very gentle nature.
Active for Tom, gentle for Amelia.
They can be trained as well if not better than my favorite breed, the Labrador.

It is an extra workload...........but it is a good one and a distraction.
While the kids are at school I will have a companion.
I will also have to walk HER daily so I may be able to lose some of my "donut fat".

Choosing which puppy from the litter was easy.
No arguments.
Scott, Amelia and Tom instantly fell in love with the lighter golden one.
I wanted one of the tan coloured pups (there were 4 tan).
Majority rules, so I lost.
I didn't mind at the time and still don't.
They were all gorgeous.
Amelia chose the bed and each child chose a toy.
Tom gets to choose the colar and lead.

The name was difficult.
We were able to convince Tom that "mojo" was not going to win.
I was reading out names and Amelia jumped at HONEY.
Tom was not going to agree.
Now he wanted Goldie.
But with Scott, Amelia and I liking HONEY we needed Tom to agree.
No majority rules here.
If  we cannot get Tom to agree then there will be the biggest tantrum and we will never hear the end of it.

Our solution ?
I asked Scott loudly "Didn't there used to be a Melbourne Football player with the surname Honey?".
SOLD.
There is no "honey" player but that doesn't matter does it ?
(smack back of hand BAD MOTHER).

Photo's will have to come later because my computer will not let me upload them right now.

xxx

Awesome, awesome and awesome.

Very Interesting.
The hompage on this blog has changed since I was last on here.
There is now a very bold section telling me how many comments I have received since I began writing.

Comments ?
I did not know anyone had written comments !!!

I have just had the pleasure of reading messages from total strangers about specific blog entries.

Thank you.
I apologise for not replying but I have never been made aware of them until tonight !!

I have been very fortunate to regularly read comments on Facebook (where I "share" my entries on Amelia's Project page), inbox messages and text messages.

They remind me that I am not going crazy.
While I have always been an emotional person, I have been very careful to make sure I stay "sane" and "in control" during our unique situation.
By writing my thoughts and feelings, there is a chance that anyone following my entries may at times feel I am losing the plot.
But by writing it down it is like "cleansing" my mind.

I will now move on to my original thoughts for tonight.........

Awesome weekend.
- Tom's basketball game.
After watching him repeatedly tackle children while on the court I have told Scott we may have to explain the difference between Basketball and Football.
- Speech Therapy for Amelia.
This week we discussed Amelia's struggle to be understood.
The energy put into talking and then people asking her to repeat it because they cannot understand.
The failed efforts to participate in conversation and people not acknowledging that Amelia would like to say something.
Very difficult discussion to have because Amelia got upset about it, but one that was needed to address the issue and put "plans into place" for the future.
- Aromatherapy Party at a beautiful friend's house.
I am falling in love with the wonder of "smell" and how it can change the mood in a room full of people, help me sleep and even assist me to feel energised for the day ahead.
Amelia insisted on coming with me because she is experiencing separation anxiety quite strongly when away from me.
She was happy when she has taken into the child's bedroom at this gorgeous home and there were mermaids and One Direction on the walls !!!
- Birthday Party.
Amelia attended her first party with children from her special school class.
It was wonderful for her to see the children out of the classroom environment and I was grateful to finally meet the wonderful parents of these children.
Thank you Ryan for asking Amelia.

Above is everything we did during the day on Saturday.
To say Amelia was exhausted is an understatement !

Now onto Saturday night...........
- Trivia Night for our local Rotary Club.
They donated money to Amelia's mainstream school last year so that they could by an E book for all the special needs children to share.
I thought it approapriate that I support them in their fundraising efforts.
(The fact I still owe them money for the ticket is irrelevent !!).

And finally I finished the evening off with the Baxter mum's.
This group of mum's have been friends since our children all started school together.
Amelia has since left that school but I am very lucky to still have the friendships.

Imagine.......wine and pictionary.
I have never played that game before and I am sure it will never be AS funny again BUT byt the time I came home my chest, my ribs and my face were aching from the laughter.
We were laughing till we were crying.
Despite having so much on that day and being soooo tired I am so glad I went.

I do not think I will ever live down the moment when "wind" escaped my body very loudly.
Yes people, I farted.
But the laughter and tears that occured for the next 30 minutes were something I have not experienced in a long time.
It is also good to know that even women of our age can laugh hysterically at a fart noise !!!!

And finally today.
A wonderfully, beautiful lazy day.
Tom watched footy.
Amelia tried her best to build with lego.
Scott slept and I sat in front of our fire.

The peace was broken when Tom remembered that I SAID (his words) he could go to the neighbours on Sunday and sell the school fundraising chocolates.
I was trying to get out of it and convince him to postpone it until he showed me these pieces of paper in his hand.
He had written receipts.
Little pieces of paper with $ signs and random letters and numbers.
He had 50 of them for 50 chocolates.

Amelia in the wheelchair holding the chocolates and Tom knocking on peoples doors and being an AWESOME salesman.
He sold 50 chocolates in 30 minutes.
Some people were buying 10 at a time.
And yes, he gave everyone his gorgeous receipts.
I am so very, very glad that I went.
I came home so proud of his confidence and ability to communicate to strangers.

Amelia celebrates her 9th birthday in 8 days.
So this week will be spent planning and preparing a special day for an extra special girl.....

xxx

1 life

Many, many things have happened around me lately.
Conflict, disagreement and inappropriate behaviour are not welcome in my life.
There is always a way to solve an issue........ sometimes that means walking away.

If you are like me and take "on board" other peoples issues and feel their pain then it can make your own life more difficult.

It probably explains why I end up consoling other people about Amelia's condition on a regular basis.
(that is because when I first tell them they do not know our "approach" on this situation we have been forced into).

After recent discussions, I would like to talk about something I am very passionate about......
(This also applies to anyone sad and unhappy)......

1. YOU come first.
Sometimes you make mistakes and sometimes you need to stand up for yourself.
You need to be reasonable and look at both sides in your decision.

BUT it IS just you in the end.
It IS your life and you need to take steps to make it amazing.

2. Sometimes it is necessary to realise that your immediate family (children and/or partner) are what is the most important.
We ALL feel like protectors of our immediate people and they will always come first.

Friends and extended family come and go BUT your children and partner will always be there.

3. Make a stand.
Make changes to create a "good life".
YOU come first and your family.

I am really, truly happy with everything inside my home.
Everything else can build on that.
Friends, extended family members and materialistic items are added items.

Sometimes it is SO important to think and analyze and maybe make changes.

1 life................. so make it one that YOU love.

xxx

Part 2 of reality

Last Friday I spoke of the daily role as a full time carer of Amelia.

I put no "positive spin" or happiness in my description of our routine.

Today I feel it necessary to talk about how wonderful our routine can also be.

Obviously all assistance is done with love and happiness.
It is treated as "normal" in our house.
No one sighs and makes Amelia feel bad.
Tom struggles with the last statement but he has also improved immensely.
He is beginning to learn Amelia's appreciation and smiles makes you feel good.

The conversations, the laughing and the cuddles are constant while going about our daily routine.
The learning about the psychological affect on both children is crucial in this informal environment.
Due to Tom's personality he regularly follows us and participates in conversation.

Now having both children at school, I am able to have not only some "my time" but also time to complete tasks that would take me away from valuable time with both children.

I like to think that I very lucky to be able to talk, laugh and relax with both children.
So what if our mortgage is higher than everyone else's.
So what if we struggle to pay bills and place food on the table.
So what if I have a degree and am unable to earn the extra income for our living expenses.

The time with our kids is so extremely precious.
The memories we are creating and the rapport we have built is so much more important than anything we thought our future contained 10 years ago.

But today I am being selfish and am allowing myself to be sick.
The kids keep jumping on me and giving me cuddles but I will not be firing on all canons.
I have a head cold that has knocked me for six.
A very wise person once taught me that if their is negativity, worry and unrest in your life, the inside of your body can run with it.
It can consume your inner self and make you sick.
With many things happening around me lately I think this may have happened.

Finally a report on Tom's basketball game yesterday.
He is only 5 and is learning the rules and what he needs to do to play.
So far it has been lots of happy jumping and watching the scores.
If he gets the ball he panics and quickly passes it.
I was unable to go yesterday so Scott's face when they returned told me I had missed something.
With a "stone face" Scott told me our happy little man had 2 fouls against him in the game.
Apparently in one of them he sent a child "flying".
When I questioned Tom in disbelief he innocently said "They were in the way of the ball. I wanted to get the ball".
I am sorry, but I have not stopped laughing about it all weekend .........

xxx