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

Positive energy

I have changed my mind about tonights blog.
There is enough potential negativity around me without me complaining about other people.
I would just like to address what needs to happen in the future.

I would like to ask everyone who comes in contact with Amelia to remember something..........

Amelia does not know what we know.

Adults are having trouble processing the details of A-T, how could an 8 year old understand ?

An adult would not handle knowing they are going to get worse and die early, how could a child possibly cope with that kind of knowledge.

Amelia needs happy, positive comments made towards her.
Not sympathetic and emotional ones.
Because then she questions me on "Why?"
"Why are they sad for me ?, Why are they praying for me ?"

Amelia believes A-T makes it hard for her to walk and talk and she gets tired easily.

That is it.

She does not need to know any more.

Some parents who are telling their children have created a distance between their children and Amelia.
They are scared of her.
They do not know how to treat her.
Instead of happily playing and laughing they try to process in their little minds what is going to happen to her.
They keep their distance and stare.

This is not fair on any of them.

Children should stay innocent and learn to like and love people for WHO they are.
Not what they have or what is going to happen to them.

If children want to know about Amelia's Project then explain we do not have the money to pay for the extra equipment and learning she needs. People are helping us.

I would never try to tell someone how to parent their own child but I do believe the information about Amelia and A-T is for adults only to try and process.
We are expecting too much if we think children can understand what is happening.

Criticism could now arise about the media attention Amelia's Project has recieved.
I never thought parents would be allowing their children to read the articles or having family discussions about Amelia's future though.
But I do think the awareness of A-T is far greater than staying private about it.

Please tell me if you disagree.

xxx

(Hopefully this blog does not offend anyone).

Constant

Last night as I was putting Amelia to bed, I looked at the red darkness around her eyes.
I looked at the exhaustion in her eyes and the stillness of her body.
I thought of when she was younger and used to get really sick.
I thought of Tom and the difference it makes when he is really ill.
I realised that she constantly looks like a sick child.
She IS constantly a sick child.

The fatigue, the assistance needed and ........ lying on the couch.
Where does everyone like to go when they do not feel 100% ?
The couch to lie down.
Amelia does that a lot.

I then began thinking about how parents feel when their child is sick with a cold, gastro, tonsilitis etc.
It makes your heart sink seeing them so unwell.
Seeing the life zapped out of them.
You just cannot wait to see them bouncing with energy again.

Last night I realised Amelia is always unwell.
And I have been struggling, waiting for her to come back to life.
Without realising it, I am constantly looking after a sick child..............
Or maybe not wanting to sit back and realise it.

I have to let this child go to school, friends houses, grandparents and to bed every night.......and she is not well.

When she laughs hysterically or smiles a genuinely happy smile, it is a massive thing in my day.
Just for a moment I can stop being over protective and enjoy this "minute in time" as one of pure happiness.

You honestly do not know true happiness until you see a child who struggles with everything uncontrollably laugh.

In 44 days we leave for Disneyland.
I know that she will be exhausted and tired for our "holiday of memories".
But I know that there will be a lot of pure happiness.
I also know there will be a lot of happy tears from me.

xxx

(This is the first blog that actually made me cry while writing it).

Many Specialists

Amelia has had many specialists working with her since 2006.
Sometimes you feel what they do is beneficial, sometimes you think it is a waste of precious time.

I finally feel that we have surrounded ourselves with the very best people to guide us through this journey.
The best people to help Amelia achieve the maximum from herself while also adoring her like we do.

Amelia's Physiotherapist has been with her since 2006.
The skills of balance, strength and co-ordination are the main focus.
Myff has travelled every high and low that we have.
She became my rock, the person to give me an honest answer when everything became too confusing.
Myff also grieved with us last December.
She has become a special person to our family in the last few years.

Amelia's Occupational Therapist has been working with Amelia for about 14 months. She is our third OT. I not only feel we are in the hands of great expertise with Lindsay, I also like that we are a part of SCOPE through her. Their knowledge of equipment, funding and looking "outside of the square" is reassuring.
Lindsay assists Amelia with the classroom being accessible, the best way to tackle schoolwork, computer, getting dressed, eating etc etc etc.
I have built a wonderful relationship with her in such a short amount of time.

There have been many speech therapists over the past few years.
In 2 weeks we begin working with someone who appears to have a good understanding of Amelia's condition. After doing an assessment at school, I was very impressed with her comments on breathing, swallowing and recognising exactly where Amelia struggles.

Soon we begin hydrotherapy (swimming exercises in a hot pool).

Our paediatrition checks general health twice per year at the Royal Children Hospital. So it is always good to be on their books.

Amelia's school, where she currently spends 4 days per week, is wonderful. I think the initial shock of her RE-diagnosis is now wearing off and they are enjoying spending time with her. The thoughts of the future have maybe been replaced by the magic of now.
Amelia is starting to need work broken down for her so it is easier to understand and participate. More assistance will be needed next year with schoolwork, self-care and safety. But that is something we can work out in the next few months.

Socially, Amelia thrives.
Even though she gets extremely tired, she loves talking and laughing with other children and adults.
Inside her mind she is still "normal".
People may not think she is listening (and quite often we have to say her name to gain eye contact) but she thrives on interaction.
She will remind us often of what people have done or said after the event.
I like to think that children (and adults) around Amelia will be introduced to a whole new world. One that is a little different than "normal".
It is very emotional when you see Amelia incredibly happy and enjoying herself. I know many feel the same way.
My view on life has changed dramatically in the last 9 months and know many who feel the same around us.

Today when we arrived at Tom's Disco at Kinder, Amelia got out of the car, threw her arms in the air and said "Amelia is in the house" !!!!!

Talking of which, today was the end of an era at our Kinder.
I drive past 3 Kinder's to go to this one.
When I was teaching, Kaye would quite often give professional developement ideas to the rest of us.
Her ideas were always amazing and the hours she worked made a lot of us feel that we would never be able to achieve the amount of things she did for the kids.
When Amelia began her year with Kaye, I was still teaching a group.
I found it extremely intimidating to leave my work and go and see what she had done with Amelia's group in the same session time.
I am disappointed that Tom does not get a whole year with her but I feel very honoured to have met such a talented individual.
To know, love and understand every individual child like she did was magic.
To make parents see and learn about every positive aspect of their own child was also heartwarming.
My children are very lucky to have had such a beautiful person enter their lives at such a crucial stage of their developement.
Goodbye Kaye and I hope you continue knocking down walls for acceptance of ALL children, even those with special needs...........

xxx

Amelia's Project FUNDS

Today Shell and I banked a lot of money into Amelia's Project account.
It was money left over from The Amelia Night and some tins that had been returned.
My life is an open book and I want Amelia's Project funds to be the same.
A minimum of two Committee members count ANY money and then Shell records it.
If $1 is missing, Shell wants the receipt !!!!!
Love it.
If Scott and I need to withdraw any money we get approval from the Committee first.
It has to be something to contribute to Amelia's beautiful life or assist with renovations and therapy.
Nothing else.
We also require 2 signatures on ALL cheques.
Other peoples money being spent on the only purpose it was donated for.

At the moment, I have taken out money for passports ($780), deposit on Disneyland ($7000) and our aprons/supplies for the teaparty ($100).

At our final Project Meeting for 2011, it was agreed on giving BrAshA-T a donation. They are doing everything to try and save A-T children around the world.
We proudly gave a cheque for $10,000.

Everything we have done this year has been pure profit.
The only large expense we had to outlay is dinner at The Amelia Night.
And that was only $30 per head (and that was included in the ticket price).
Everything else has been donated.
The tins, the sausage sizzles, the raffle items at MacDonalds, the cupcakes, the room hire, the auctioneer (who made our night so much fun) and peoples time, support and advice.

I would never, ever have done any of these things.
Your pride and dignity suffers when you ask people for their hard earned money and time.
But YOU all demanded it.
Told me to sit there and be quiet !!!
So I thank you.

We now have enough funds to pay for Physiotherapy, Occupational Therapy, Psychology (for both children), speech therapy and medical visits. They are all private practioners.
We can renovate the house to suit a wheelchair and have a suitable shower for Amelia.
We can go to Disneyland.

In the future, we may need an electric wheelchair and car to accomodate it.

Amelia has her own laptop (and will soon have appropriate software) and Ipad.

Next year I hope to enrich her immediate school environment with equipment and maybe support that will have her coming home again saying "how much fun her day has been" rather than "how hard it has been".
Something that would benefit ALL children at the school but Amelia first.
Maximize learning ability while also making it easier.
But that is something Amelia's Project Committee would need to agree upon.
I cannot do it without their support.

Once Disneyland and bathroom are completed we will have approximately $10,000 left.

That is unbelievable.
People have been so very kind.

I know some people may disagree with this privelege but it is something many around us have chosen to do. To help us now.
Disneyland may be an extravagance, but it will be a memory to last forever and ever.

 Amelia's life is and will be amazing.

xxx

Next ........

I have found it much easier to adopt the motto "one day at a time" to my life at the moment.
It could even be changed to "one event at a time".
Under the heading of events includes all of the major fundraisers, minor ones, family commitments, school and Kinder responsibilities.

Tonight I sat down for 2 hours and updated my diary.
Kinder, school, medical appointments and social occasions.
This pile of paperwork on my bench needed sorting.
This is a big job that has been staring at me for weeks.

Now I am moving my focus towards Disneyland.
Clothes, shoes, bathers, visa's and pay the remaining amount for our trip.
ALL need to be looked at and I may need to shop (now that may be fun!).

We are also very lucky to have housesitters while we are gone.
So after the year of , "I cannot be bothered cleaning", the house needs a massive clean.
I would be very embarrassed leaving it to a family the way it is now.

So I am calling this .......... Week 1 of getting on top of my jobs !!!!

One of those roles is to reply to all the text messages, inbox and email's I have received in the last few weeks. I apologise if you are still waiting for a reply !!!!!

Scott said yesterday "just rest". Ha ha ha ha ha ha ha ha !!!!!!
And that was after my neighbour witnessed me on my hands and knees beside the car (not a pretty sight!!). We had just returned from the previous nights Gala Dinner and the car ride home made my stomach do many somersaults.  So I rolled out of the car and stayed at ground level !!!

So my point is, when do mum's rest ??
Never !!
.......well maybe while drinking lots of alcohol at a Gala Night.........

xxx