New Day

Thankfully I have woken up today in a much better mood.
I appreciate all the comments I received saying that I am not the only one to experience days like yesterday.

Thinking of asking the "True Blood" creators and onion farmers for a cut of their profits.
From all my messages I think both are doing extremely well at the moment!

Amelia is really happy lately.
I think it may have something to do with the extra assistance she is now getting in the classroom.
Maybe she does not feel that school is "so hard" now.
And she is lucky, because the people helping her genuinely have her best interests covered.
They actually seem to really care about her.

Spoke to Ann in California today.
On our first day in Anaheim she is going to take me to Cosco.
I will stock up on all the esentials so that we do not have to pay the ridiculous prices in Disneyland.
Bottled water and juice will save us a fortune.
We also discussed Ann and her husband Felippe driving us all down to San Diego one day.
It would take about 90 minutes and their seaworld and zoo are awesome.
Dad keeps asking me if 9 days is going to be long enough for everything I want us all to do !!

Anyway.....only 24 more sleeps.

AND something else.....

While we are gone a beautiful friends husband (who was at the Amelia Night) would like to renovate our 2 bathrooms.
One to accomodate baths and one to accomodate showers.
All of the trademen he has recruited would like to do the work for free.
So we will just pay for the materials.
How kind is that ?

So that is nice way to finish todays blog isn't it ??!!

xxx

Out of the blue

Out of the blue I woke up in a horrible mood.

I do not want to see anyone or talk to anyone.
But I have.

I am annoyed that my life cannot just pause for a while so I can get over this "hump" in the road.
I know that it will pass but at the moment I just want to scream or at least punch a wall.

But washing, running a house and cooking dinner must continue.
And children.
One child who needs a lot of extra assistance with everything.
But today I just want to stare at a wall.

I am not resentful of Amelia and her condition but I am resentful of the fact that I cannot just have an alone day.
A day to overcome whatever has taken hold of me.

It has made me feel slightly better that Amelia has just rolled with the day. I have explained everything to her in a humorous way so that she does not feel it is her fault.
Tom joined the "bad mood brigade".
So he is now at mum and dad's having fun.
Away from me.

Scott has just returned from Mildura and wants to return !

An element of my feelings is "self pity".
But I will fight that.

Hopefully my demeanor is hormonal and will pass as quickly as it came.

At times like this it is also good to know that every woman, man and child has bad mood days.

So......tomorrow is a new day and hopefully a better blog.....

xxx

Mainly highs

This week I have rolled with the punches.
I have also been lucky enough to roll with the "highs".

The most recent would have to be the treatment of Tom at the Primary School today.
You do not realise a 5 years old's thinking of his sister's school until you listen to his surprise of going to art and music weekly.
When he says "can you ask the sports teacher to take it easy on me on my first day".

The anxiety after our car accident reached fever pitch for poor Tom.
REALLY odd behaviour and mannerisms began.
Once the talk of school next year began, he became worse.

So today an incredible person at the school showed him around.
Everywhere.
I say incredible because he talked to Tom.
He described and explained things so that Tom understands what he will be doing next year.
I have not seen the anxiety behaviour at all today.

Then Amelia woke me up very early today.
Excited that it is "Friday".
Today Amelia had a project to present to the class.
She had to give a talk about Community helpers.
She had interviewed Scott about making plastic products, including our council rubbish bins.
Such excitement about interviewing, writing and presenting over the last week.
Apparently she got extra ticks for smiling and looking at the audience.
It makes me emotional that the school knew she would be able to do it. They also insisted on doing all the practice during school hours.

Something that may appear exhuberant and selfish..........I booked another holiday.
We didn't use Amelia's Project funds, we used our weekly money.
When we get back from America,I have been worried that we will crash and burn.....mentally.
This whole year has been geared to going to Disneyland.
So when we get home........I need to be busy again.
I need to keep my mind occupied.
If I fall apart, I worry everyone will.

So.............
November 17th , Eclipse at midnight.
Amelia finishing Grade 2 and Christmas.
AND now January 11th - 18th 2012, the kids and I are going to stay with a good friend in Coolum, Queensland.
She has 4 gorgeous daughters that spoil my two.
I can relax with my friend and........just be.
Before we come home and begin another full on school year and Tom entering Primary School permanently.

Then Amelia's Project begins again.
This week I heard about something being organised that will make it even bigger than it aleady is.

So must go and watch True Blood now.
Have a beautiful weekend everyone.

xxx

Onions, musicals, vomit and Vampires !!!

So how many people are sleeping with onions next to their bed after last nights blog ??!!
I can only imagine !!

Interesting day today.
Amelia spent the morning vomiting.
I have no idea why.
After a few hours she got up (from being lifeless seconds earlier) and was starving.
So whatever it was is hopefully gone.

Tom had his first invite as a "prep in 2012" at the Primary School today.
We were invited to go and see the Grade 6 musical.
It was so good and brought back so many memories.
My beautiful dad came to sit with Amelia so that she could continue vomiting and then I could go and let Tom enjoy feeling special and important.
We danced and sang along to Hairspray, high school musical, Grease, Mumma Mia and The Lion King.
It was run so well we had no idea that a boy had fallen over backstage and an ambulance had been called.
He has recovered apparently but I felt for the poor mum (who I know) receiving THAT phone call.
But the memories came flooding back from my Grade 6 musical.
Alice In Wonderland.
I was the Cheshire Cat and it was one of my most favorite experiences ever.

Thank you everyone for putting up with my constant talk of True Blood.
I think I love it for many different reasons.
Firstly, Scott and I ALWAYS sit at opposite ends of the house once the kids go to bed.
We generally like different TV shows and I have my computer obsession.
But now we excitedly get the kids to bed so we can get the next episode started!!!
And the other thing is, after you get to Episode 6, Season 1, you are hooked.
Hook, line and sinker.
It just gets better and better !!!
Anything to bring some extra happiness and excitement into our home (even if it is through vampires, sex and romance).

Soon you will be able to read my blogs and see LOTS of photo's from Disneyland.
I want you to all try and live it with us........

xxx

Up, down and all around

Once again it has been an interesting week of emotions.

The weekend was busy, much busier than usual.

On Saturday morning "the Moshi Monster" expert (an 8 year old girl) came over to give the kids and I inside information on how to get further in the website.
Definately a very computer literate little girl and one I struggled to keep up with.
But Amelia and Tom now have "moshlings" and they are very happy !!!!

Saturday afternoon Amelia had her first appointment with a very clever speech therapist.
She was "spot on" with her recognition of Amelia's difficulties and how to help her manage it.
Swallowing and breathing while talking have been addressed and Amelia just needs simple reminders to help her remember what to do.

Sunday was Fathers Day and we celebrated a very special day with Scott, my dad and Scott's dad.

Amelia was tired Monday and came home from school exhausted.
She was eager to tell me some incidents that had occured in the playground at school though.
One child told her she does not now how to catch a ball, another close friend said "we are breaking up" and finally someone asked her........."do you ever wish you were normal".
She was really down that night and we found ourselves giving lots of cuddles and reassurance.
This morning at Tom's Kinder a child said "you cannot talk properly. You talk like a baby".
I was impressed to see Tom jump to her defence.
I said to him "yes she can talk properly. YOU just can't understand her".

I think that I may take Amelia to look at the special school I looked at a few months ago.
The one where they are intellectually ok but physically they have difficulties.
See what she thinks and whether she would like to consider attending one day a week next year.
It may help her to see that she is normal.
Everyone is normal.
No one is the same, everyone is different.
At this special school she could see that there are lots of children just like her.
She just hasn't met them yet.

Imagine watching everyone laugh, run, jump and be full of energy........
While you stand there struggling to put one foot in front of the other.
You struggle to hold a conversation.........
To get them to stay long enough and listen while you get the words out.
You feel so incredibly tired...........
all of the time.

Maybe it is time we start introducing her to other children that have difficulties too.
Children that also go to school.

Just a thought at the moment.......

Then something very funny happens.

Another A-T family told me about an old wives tale..........
Put onions next to your bed.
Do not peel them or cut them.
They absorb all bacteria and infection and keep a person healthy.
I thought there was no harm in trying this out.
We have slept the whole Winter with onions next to the kids beds.
The kids have had the healthiest Winter they have ever had.
For the first time ever in Amelia's life she has not had croup once this year.
Then we did a really stupid thing.
We needed them for cooking and I did not replace them.
We ate the onions possibly full of bacteria and infection.
Now we have all been sick for over two weeks.
Coincidence ???
Maybe.
(But if you google this myth it says do not put onions in the fridge and then eat them because of the amount of bacteria they have absorbed).
So now we ALL have onions next to us at night.
Interesting talking point when people come over !!!!

So tonight I had the biggest laugh this week when I was looking at Facebook (after finishing another 2 episodes of True Blood of course!).......
I read the following status from my male neighbour whose wife I adore...(I hope that he does not mind if I copy and paste it).......

" Should i be worried? - i really like our neighbour .... but now find myself lying in bed next to an onion ...and just finished watching some vampire series....worse still i found myself wanting more !!".

xxx

Difficult week.......

The emotions this week have been difficult to handle.
Up....Down....All over the place.

Tuesday night, Amelia came home very excited.
She told me she had something very important in her school bag for me.
I had not seen her so happy (after school) for ages.

She opens her bag and gets out a scrap piece of paper from one of her best friends.
It says "Frankston Kmart".
"We have to go there and get baby moshlings" she said excitedly.
Now, Amelia and Tom have been addicted to the Moshi Monster website for a while now.
You make a monster and have to look after it.
They love it.
That night Amelia was planning our shopping trip and actually writing a shopping list (she never writes now).
She got money out of her own purse and was motivated to do something.
I have not seen this for a while.
I had no idea what we would be buying but was obviously very keen to take her.

The next day we had an appointment at The Royal Children's Hospital.
It was to be our first appointment with Immunology since Amelia's A-T diagnosis.
We were both actually quite excited to spend the day together.
We sang and danced in the car on the way there and giggled in the waiting room for over an hour.

The doctors called us in and, as always, needed some background history.
Then we discussed A-T and the implications on Amelia's immune system (in a positive way for Amelia).
Then the supervisor was called in to give a second opinion.

She mentioned the importance of us visiting this clinic on a regular basis and for them to constantly review Amelia's immune system.
To keep her healthy as long as possible.
The only way to do this?
Blood tests and extra immunisations.

They discussed we could begin this at any time.

I looked over at Amelia and she was crying.
A reminder that she listens to everything being said.
She staggered over to me and collapsed into my arms, sobbing.

Because of Amelia's needle phobia, I try to avoid all blood tests and needles.
But I understood that this was necessary to keep her healthy and in the future, possibly alive.
So I decided it was best to do it immediately seeing she was already distressed.

So I took her to pathology to get the An-Gel cream.
After 50 minutes the area of application is numb enough to not feel the needle.

Then we went to immunisation to enquire about the pneumonia vaccine.
The whole time she was crying and struggling to walk.

After leaving our vaccine script at the chemist we went to get lunch.
She cried through the whole of lunch and refused to use her hands.
She claimed she could not move her arms due to the cream.

She is exactly the same as I was (I only calmed down about 3 years ago) with needles.
Except I used to faint.......every time.
Even with the MRI last month the drip needle made me dizzy and they had to lay me down afterwards.
When I had my varicose veins operated on 4 years ago, they asked me to stand before surgery so that they could "draw" where they would be operating.
I fell down. Out cold. And took the whole surgical tool tray with me.

When it came time to get the blood test, Amelia had to sit on my knee with my arms wrapped around her.
I had to hold her down.
She was hysterical.
They needed to get 8 vials of blood.
She was so upset it took ages.
The blood does not flow as freely when you are stressed.
Two different treatment rooms, 2 nurses and having to lay Amelia down with her legs in the air and we finally finished.

Then we still had to go upstairs to the immunisation centre.

Once again I had to hold her down.

She cried the whole way home.

Last night she lay in a state of shock, so drained from all the upset.
No movement, no conversation.

Today was similar.

All that happiness, the night before,  I was so lucky to witness.....GONE.

We are meant to go back the week before we leave for Disneyland for another blood test.
To see whether the vaccine worked.
When our holiday was mentioned today, she cried.....lots.
She relates Disneyland with next blood test now.
Every time Disneyland is mentioned I do not want sadness.
So we made an agreement.
I explained that yesterdays needles were important, the next one not so much.
She does not have to have it.
Full stop.
She made me shake and pinky promise and I will stand by that.
It is not worth the upset.

Last night I fell into bed very early.
Emotionally drained and exhausted.
Today I woke up sick obviously a reaction from yesterday.

Then I was told something that made me really happy.
ROLLERCOASTER !
Amelia has qualified for extra assistance in the classroom at school.
All morning in fact every day.
To have someone breaking down her schoolwork for her, assisting her with everything and making sure she is safe constantly is a massive relief.

So after finishing Season 1 of True Blood tonight (yes, in 1 week) I can get back into my nightly viewing and we can all look forward to Disneyland again........
only 36 sleeps.

But first we need to go to Frankston Kmart.........

xxx

A Lesson thrown back at Me....

Today I have learnt something very important.
Today I have learnt something that I have been "preaching" for months.

Everyone deserves an "amazing" life.
To step outside of their comfort zone and do something just for themselves.
Or , in this case, take their talent elsewhere and improve their own life at the same time.

Tom's Kinder teacher left 9 days ago.
Today we had a very special afternoon tea at the Kinder to say our final goodbye.

I realised how selfish I have been in slightly resenting her for leaving us.
But I must say I did not realise that uncomfortable feeling until today.

This year, I looked at her as one of my "rocks".
The stability and continuity in our family 3 times a week.
Someone to look out for one of my children.
Then she resigned.

Now anyone can resign, but this person is indescribable.
Her ability and natural talent with children and their parents is unique.
Her ability to be honest and yet so positive is remarkable.

One crucial year in Tom's life.
One year where he really needs her.
And then she is gone.

But..........................................................................................
Tom's ability to change and adapt is obviously much better than my own.
He loves his new teacher.
Tom is acting like nothing is different.

Then today after speaking to this well known teacher and her husband, I realised the point I have missed.

She has changed a part of her life that was so consuming, she has created a life that allows for family and friends.
This past week she has done daily chores and actually watched television.
Things we take for granted she is now doing.

Her life was so consumed in our children's development that she forgot to make a life for herself.

Today I have been reminded of the importance of creating your own life.
And making it amazing...........
And sometimes that means making a change.

xxx