School Holidays

Hello.
My apologies for not writing for so long but we have been really busy AND I have taken the time to get myself back on track.....mentally.
The positivity has taken a while to return but I am very happy to report that it has !

Scott has taken two weeks leave so he has been a wonderful support in getting us out and about.
The 24 hour assistance with the kids and the house has also been a saviour.

Last week we had to take Tom to a "sibling day" at Very Special Kids in Malvern.
This organisation has recently accepted us into their group.
They have a "house" set up for children with "life threatening illnesses".
After having a tour last week it can be best described as a nursing home for kids.
There are fully qualified nurses constantly and a doctor on call.
Volunteers are on a roster and the children are free to play wherever they want.
Amelia loved the "sensory room".
Lots of colour, lights and bubble machines.
There is also a music room, xbox, TV, full kitchen and full time cook.
There is 8 bedrooms that can be booked by VSK families for respite.
For those like me, there is a parent accomodation house out the back.
After we had our tour, we had a talk with the staff.
I explained that I do not need respite and would like to keep the option available for maybe sometime in the future.
Scott and Amelia were horrified.
Amelia WANTS to stay on "holiday" and Scott wants her to come and enjoy it.
Ok.
It is a 3 month ahead booking process so I guess I better book her and her father in sometime (yes. Scott will attend the first one!).

Tom spent 4 1/2 hours at the sibling day where the theme was "Disneyland".
When he came out he was exceptionally quiet.
(Normally we would take him to hospital because something must be really wrong).
We got little bits of info from him and when he got home he began unpacking his bag.
He began playing a game with Amelia.
A game about "My sick sibling".
Questions about "My sick sibling".

Now I understand why he may be so quiet.
We do not refer to Amelia as "sick".
He said that he will go next school holidays "if you want me to".
We will wait and see........

On Thursday and Friday of last week, Scott insisted that we all go and stay at mum and dad's empty flat in the city.
We all left begrudgingly and negative.
We returned happy and positive.
We had dinner at Chinatown and spent the next day walking around Albert Park Lake.
Awesome family time and wonderful to break the monotony of home.

One conversation that I will not forget with Amelia and Tom will stay with me forever.
The morning of leaving to go to the city, I was out of bed at the same time as the kids.
This has not been happening lately because of my depression and exceptional tiredness.
When I have stayed in bed (weekends and school holidays), I always get up to Amelia on the couch, watching TV with her dressing gown on.

On this particular morning last week as I escorted her to her bedroom, I began putting her dressing gown on.
Tom casually said "I normally do that".
Later in the car I questioned what he meant.
He said "In the mornings I take Amelia and help her on the toilet. Then I put her dressing gown on".
At this point Amelia interupts "He always takes me to the couch and puts the telly on for me".

The overwhelming battle of whether to feel like an incredibly bad mother or be so very, very proud of our 6 year old boy has been on my mind ever since.

xxx

Inside my thoughts ........

This blog is about to reach 35,000 views in total ... over 18 months.
Thank you for sharing our "delicate" life with us.
Your support of our daughter and hopes and dreams for her future do not go unnoticed.

Recently I realised that I needed a new approach to the way I deal with each day.
The recent sickness only accelerated what was already under the surface.

Depression, sadness and no motivation to do anything.

After visiting our doctor, I had my current medication increased.
I also received a referral to go and see a psychologist.

Changes have started happening around the house too.
The last few days I have been getting out of bed at a more reasonable hour.
I am making a MASSIVE effort to leave the house occasionally.
This can be a very big task from all angles but I am working on it.
Last week we went for a walk at our local beach and on the weekend Amelia spent an afternoon at our neighbours.

Amelia is currently depressed too.
But I am an adult who can mentally address the issues.
She cannot.
Amelia just says "I am always sad".

In the last few days I have seen the smile occasionally.

I need to "pull out all stops" to make sure we get out daily and have contact with other people.
That is when Amelia smiles.

Our new puppy makes her laugh too.
We now call Honey "the nutter" for her 13 week old behaviour.

Personally I need to stop getting so excited when I feel positive emotions.
Just because I am happy, motivated or excited sometimes DOES NOT MEAN EVERYTHING IS FINE NOW.
As soon as I feel "normal" again, I believe all the "sad" is gone.

The "sad" will always be there.
It will always reappear.
Whether it is because Amelia cannot walk today or reading about the young A-T man in America asking his mum to turn his life support ventilator off.
It is always going to be there NOW.

Added financial pressures this year have also made life extremely difficult.
Mortgage, bills, daily expenses and only 1 wage definately takes it's toll.
I am not ashamed to say we are struggling.
The debt is rising.
And I know so many of you are too.
Recently I have been offered work from two different people in the teaching industry.
I contemplate it, get excited about it and finally........try to work out doing it.
It cannot happen.
It just can't.
Amelia's special school bus and frequent time off make it impossible.

So I am going to take each day as it comes.
I always thought I did, but now I know I didn't.
I have always been one to look ahead.
Now I plan to wake up each day and think of that day only.
All positive energy and happiness will focus on just that day.

I have also learnt that I need something to look forward to.
It draaaaaaaags a little excitement out.
I am absolutely determined to take my family to Fiji in 2013.
What better thing to look forward to than a holiday ????
I will need to research suitable destinations for a wheelchair but that will KEEP me excited.

On a bad day, do you know what I think about ???

DISNEYLAND.

I have memories to last a lifetime from that most magical place in the world.
It makes me SO emotional to remember how happy and childish we ALL were in that amazing place.

I try to inject some of that same enthusiasm into each and every single day.

Thank you for reading my blog.

xxx

Bare with me : Part 3

Getting quite funny ....... this title.
(Sorry. But I am at the insanely, hysterical stage now).

I am trying.
I am trying so hard that it is at the ridiculously, funny stage.

I am pulling all the animated, happy and childish behaviour out that I can find.

This week I started Amelia on a tablet (crushed) that is full of goodness from plants in India and millions of other "potent" ingredients.
Ingredients that research says can "save dying brain cells", destroy "oxidative stress" (a major cause of A-T) and create radical cells to kill cancer.

The first two days were interesting.

Day 1 : Hysterical laughing from Amelia.
Like uncontrollably.
When I questioned her on this abnormal behaviour, she would say "I am just so happy".
Understandably I read the ingredients again, this time checking for "MARIJUANA" !!!!

Day 2: Amelia scooped egg out of an egg cup BY HERSELF.
She has not been able to do this for a long time.
So obviously, I got a bit excited.
Fine motor activity AND immense happiness.

Then today came.

Hmmmmm.

In the midst of "sadness" Amelia and I saw an old playgroup mum (have not seen since pre-diagnosis.... yes that is our life now).

She now thinks our life is so bad.
I was trying to say to her "this is not the way we normally are".
I was stopping my tears coming.
Then I realised hers were already there.

I saw in her eyes what OUR life has become.

That was a massive turning point for me.
FUCK this .... I thought.
I do not want people looking at us like this.

REWIND.

Amelia was sobbing (crying) outside Target (local department store) because I could not understand what she was saying.
Yes.
I could not understand what my 9 year old was trying to tell me.
Over and over I could not understand her.

So incredibly frustrating for her AND me.
But for her....she has the A-T.
I do not.

So I tried with "all my might" to find every ounce of happiness and childish energy....

Walk into the "junk shop" Amelia was desperate to spend her money.
No wheelchair access.
So I get her out and walked with my arms wrapped around her.
Supporting her, holding her up.
She walked the whole shop.
She looked at every single thing.

After making Amelia's purchases we left.
I walked straight into our local supermarket and taught Amelia what you do on a "sad day".
We bought potato chips, donuts and chocolate.

Then I remembered.
Bakery !!!!!
So we circumnavigated for our finger buns !
(yes. I have a routine).

Amelia giggled and laughed the whole way.

I was not a "good mum" in one way, but maybe I am in another way........

Teach your daughter "emotional eating" !!!

So now as I drink wine and wash my day away, Amelia cuddles her daddy on the couch and watches "The Muppets".

Another "child" was admitted to hospital in America today.
He has been placed on a ventilator indefinately.
His mum is currently having the "end of life talk" with him.

I am trying.
I am really, really trying........

xxx

Bare with me : Part 2

This is the continuation from a blog that I wrote last week.
I chose not to "share" it on facebook because I was worried the reaction may make my current situation worse.

It appears people read this blog without the reminder on facebook.
But at least the people who did read it knew we are travelling through a stage (me more than anyone) and trust that I will take the appropriate steps to kick that "stage" up it's royal arse.

On Friday night, a person who will remain nameless, picked me up from home and took me back to HER house (oops gave away a hint!).
As we were leaving, Scott's pleading of "please make her happy again" were hard to ignore.

My kidnapper than gave me copius amounts of alcohol.
(the next day I felt like I had fried my brain)
We talked and talked and talked.
She lectured about me needing to seek assistance and Amelia's need for me to be "happy" again.

I agreed with her comments and knew that I now need to seek medical attention.

As well as me being depressed, Amelia has been too the last 2 weeks.

My form of depression has been to struggle smiling and laughing.
Find it extremely difficult to get out of bed each morning.
Have no energy to wash my hair and dress nicely.

Just cannot be f@*#ed  really.
Cannot be bothered.

I know our recent illness made it plummet further than it already was.

But since Friday night I have started feeling a little better.
I am also realising Amelia's sadness more.

So I will seek medical intervention and try my best to find "happy me" again.

xxx

Bare with me ......

F*#@ !!!

I just want to scream, cry or smash a wall at the moment.
But I won't....

In the "recovery" days after this debilitating flu we have experienced, I struggle to find energy and happiness...

I seem to have struggled to find happiness all year and it is really starting to piss me off.

Last year was good.
It was full of excitement, hope and happiness.
Mostly anyway.......
We had just found out about Amelia's disease BUT with everything Amelia's Project, Disneyland and then this adreneline rush of "life", it was easy to be busy.

Now there is just life.
Everyday life.

Time to look at our situation, look at our past, look at our future and time to think.
All day, everyday.

I lose myself in books, movies and TV, trying to find something....
Something to give me that massive kick up the bottom I need right now.
But they seem to make it worse.

Losing yourself in someone elses life (make believe or not) does not allow you to focus on the good in your own life.
Well for me anyway.

For some reason I am just seeing all the bad.

Amelia's disease.
Tom's need for normal parenting and assistance with his education.
Me being home constantly.
Boring meals.
Nothing to look forward to.

Tom needs practice with reading and writing but I struggle to find the energy.
Amelia needs me constantly but I struggle to find the energy.
Our household needs daily running and it looks like a bomb has hit it.

I feel like I want to run until I collapse or run away to a tropical island.

I hate feeling like this and hope I can find some happiness again soon.

To see me you may not notice.
It is all stuff in my head.
So do not feel the need to admit me.....just yet.

xxx

Sick Week

I can honestly say that Tom has been sick only 2 times in his little life.
One of those times was this week.

When Tom was still asleep at 8:05am on Monday morning, I knew something was wrong.
When he eventually woke up he was emotional and complaining of "hurting" everywhere.

For the entire day he slept.
He would wake up to have a sip of water and then fall asleep again.

It was sad for me to watch and definately pulled at my heart strings BUT I knew he would recover.

The next day was Tom's 6th Birthday and unfortunately he was still sick.
I could also feel strong body aches taking over me.

Wednesday....Tom and I are very sick.

Thursday ....Amelia is home and feels average and Scott wakes up lying in a massive bucket of sweat.

Hmmmmmm.

A week of lying on the couch (or in bed) unable to move.

As Scott, Tom and I slowly recover, Amelia is definately beginning to suffer like we all have.
Antibiotics immediately for her, we do not want to risk a hospital visit.

So fingers crossed for a better week, next week.

I would like to personally thank *Mr Christian Grey for getting me through this week.

He has made it a lot easier to rest and lie on the couch.
The anticipation of the next page (literally) making it easier to get out of bed and move to the lounge room.

So cheers to recovery for my family and the many people on FB that are sick right now.

xxx

* 50 shades of grey : Book

Distraction

For as long as I can remember I like to keep "busy".

Whether it is socialising, shopping, helping others, tidying OR cleaning out my house.....
It is good for my psych.

It makes me feel worthy.
It makes me feel worthy to myself.
I have always suffered from low self esteem and self worth.
If I clean and have a healthy friendship base around me then I feel happy.

That has not changed in recent times.
I may have changed my focus recently though.

If Amelia has only one life....then so do I.

My jobs, chores, obligations and pressure on myself now includes a new element.

Me.

The pressure of daily life now includes MY television shows, MY movies and My books.
Something I have never allowed myself time for.

Imagine my disappointment when I look back at my previous life as a teacher with no children.

School holidays were spent "busy".

Is washing cars, cleaning house and stressing about "anything and everything" really worth it ?

No.

So as a person that has never had much interest in the previous mentioned, I proudly declare my love to take time for all things ME..........

(even if the **"RED ROOM OF PAIN" would never be something I would want to enter!!)

xxx

** 50 shades of Grey BOOK>
(highly recommend xxx)