Saturday, 12 November 2011

I have 1 ticket !!!!!!!

I have just reviewed MY LIST for Breaking Dawn Part 1 ticets for Midnight THIS Wednesday 16th November.

On Amelia's Project page in the search section of the page I typed "Breaking Dawn Part 1 20 tickets".

I wrote down everyone's names that asked for one.

Please go and read that status.

My beautiful friend Kel features heavily in the comments.

Made me smile to remember her enthusiasm for The Twilight Saga.

So here are the names I have coming......

Jodi Hillis
Jade Price

That makes 19 people.

Who wants to grab the last one ??????

I will also be.......
Sunday : watching Twilight at 8pm.
Monday : watching New Moon at 8pm.
Tuesday : watching Eclipse at 8pm.

Let me know if you want to come and join me.

Sooooooooo excited.

Finally the sex scenes !!!!!!!


Friday, 11 November 2011

BIG response

In our doctor and specialist appointments, I am regularly asked...

"Do you have a good support network?".

My immediate response is to laugh and say.....
"You have no idea how big it is".

Last night I wrote about something that is very raw and personal.
Each individual can only decide for themselves whether they believe in God or not.

After much emotion and thought I came to a conclusion on my decision.

When I told Scott about what I planned to write about last night he said "No. Don't".


Because he did not want me to offend anyone.

This is my blog.
Whether you choose to read it.... is your decision.
Whether you choose to agree with it..... is your decision.

But rather than crumble and become a depressive mess, I choose to express my feelings as they arise.
I will let them saturate my mind and then I will begin the process of "my solution".
My solution is the avenue I will choose on this "journey" to let me continue each day in a positive manner.

I have had to encounter many thoughts and feelings that anyone would experience if they were told their child had "a terminal illness".

At this point in time, Amelia has a chronic disease that is terminal.

This blog and my "support network" are more beneficial than any weekly psychology session.

When I finish writing, I have completed an explanation not only to you, but also to myself.
I sort out my thoughts while I am writing.

Every morning after I have written a blog like last nights one, I wake up feeling cleansed.
I have come to a conclusion on a thought that was really upsetting me.

This is my way and it is working.

Another part to my therapy is the responses that I recieve.
They do help me get through each and every day.
They do make me feel it is ok to continue writing about my deepest, darkest thoughts.

Many times this year I have been approached about something I have written.
The general consensus is the topics are normally kept private but people are realising we all struggle at some time in our lives.

The difference with me is that I have nothing to lose.
And I have to cleanse my thoughts to continue with the positives.

Today ?

From the moment I woke up this morning my phone was recieving messages.
My facebook inbox was flooded.
Many people approached me at school drop off.

ALL looking and sounding concerned.

Across the course of the day, after I had flowers delivered to the front door (thankyou Anna.E.) and a 1 hour chat to Ann on Skype, I realised some people believed I was still in a depressive state.

My blog generally helps relieve that feeling.

As I told Ann today, if I am in real trouble and need help, I will definately ask for it.

But sometimes I just need to let myself think of the negatives.

It helps me to justify the positives so much more.

Thank you to everyone for all the support, love and advice.
It helps me get through everyday.

It helps me to remember happiness and having fun.

But I also hope it helps each one of you on your journey in life.
You may not agree with me but hopefully it begins a thought process for your own individual self.


Thursday, 10 November 2011

My thoughts and beliefs......

I woke up this morning and felt like a "dead weight".
I could not move.
Everyone else was still asleep and we had to leave the house in 30 minutes to get Tom to Kinder and then Amelia to school.
Lunchboxes were not packed and school bags were not ready.

But I seriously could not move.
So after everyone woke up I mumbled to Amelia and Tom they were staying home with me today.
No one argued.

Once the formalities of the day began I realised that today would be a "depression" day.
Just today I would allow it.

Very soon I was walking around the house with tears streaming down my face.
There were so many things I was thinking about.
We would not be going anywhere today.

When I went down to the toyroom to give Tom a cuddle I found him staring at the TV with tears running down his cheeks.
We talked about what he was feeling and what was upsetting him.
He mentioned "little" things from weeks ago.

Amelia was still stumbling and struggling to talk.

So today was a sad day.

We still played with playdough and competed in a game of monopoly.
I still wore my Minnie Mouse slippers and had my ipod playing constantly.
But it was still a sad day.

There does not HAVE to be a reason to be sad but I found myself questioning why I was feeling this way.

Is it Tom showing a different side of himself?
One that possibly explains the argumentative and controlling side of him?
Is it Amelia's deterioration and the fact the future gets closer every day?
Are we suffering from post-holiday depression?
Or am I just questioning "why" ????

One topic that arises when something like A-T is diagnosed is a subject that CAN cause a lot of disagreement.
I, like anyone, have an opinion on this subject.
If you are to read any further I would like you to respect my thoughts and understand that I always respect a persons right to decide for themselves.
No one is better than anyone else because of what they do or do not believe.

This year my friend list has grown considerably.
The A-T families all over the world have not only been a welcome support but also a great comfort during a difficult year.
The subject I am about to discuss features heavily on their posts.
It has made me question myself and what I feel.
I hope that I do not offend anyone in what I need to say.

The Subject?


My upbringing did not focus on The Bible.
I was not brought up to believe God created me and is looking after me.
My parents taught me to be open minded and to decide for myself what I believed in.
I went to church with the neighbours occasionally and attended some Sunday school classes.
My school had compulsory RE classes.

My belief has always been that
........... there may be a God and there may not be.
........... there may be a heaven and there may not be.
........... the bible may be real and it may not be.

I have always listened to both sides of the argument and decided that only when it is proven to me, and only me (no heresay), will I REALLY believe one side.
Darwin's "Ape Theory" or The Bible's "Adam and Eve".
And there are many, many more theories to consider.

So here is something I have been thinking about recently.

IF God is real and IF he has chosen the pathway in life for Amelia then he is not the good person some people firmly believe he is.
I would actually step out of my comfort zone and call him Evil.
Or maybe even Her nasty.

What creator would inflict such suffering and pain on an innocent child and those around her?

If I am proven wrong then I will have many questions to ask.
If I am sent to Hell for making such comments then I do so after nursing my child through a disease he possibly inflicted on her.

If it is to make us stronger and to make an example of her suffering then I question why we were chosen.
Only a very cruel and nasty person could want Amelia to disintergrate in front of our eyes.

Today a part of my emotion was from the final realisation that there is no God.
And if there is, he is Evil.

Sounds harsh and some will be offended but I cannot justify why someone would oversee this occuring.

He needs her up there ????
If that is the case ...... well, I bloody well need her down here.

What kind of person or being can Give and then take away so cruelly.

No one I could love and have faith in.


Wednesday, 9 November 2011

A-T is shit.

Just having a very DOWN moment right now.
(Before you worry, it will pass.It always does.)

We have just been through two very difficult days with both children.

It began yesterday when Tom asked me....
"Mum. When I go to school, I will have to tell all my new friends about Amelia. I will have to explain that she is not a baby".

Broke my heart.

I looked at my little man and wondered what was going on in that 5 year old little mind of his.

I explained that Amelia has been at the school for a long time and has established herself already there.
HE does not need to worry about her OR about making friends.
He is going to love going to school and everyone will love him.

I did not know what else to say.

Today he was told a story about how someone did "something" six times today and the same "thing" six times yesterday.
He looked at me immediately and said "so they did it twelve times then".
He is difficult to monitor sometimes.

Two more situations arose yesterday that I cannot discuss due to other people being involved BUT both children encoutered separate situations that needed "damage control" last night.

A-T affects the WHOLE family to a certain extent.

Amelia has had a really "tired" day today.
I have struggled to understand her speech and watched her stumble and stagger excessively.

Finally I spoke to immunology this afternoon.
I wanted to know how Amelia's blood tests results were.

"For an A-T child, her immune system is good at the moment. Her white blood cells are slightly lower than normal levels though.".

White blood cells ???
Isn't that linked to cancer ?????

After I questioned this he said they are not dangerously low but we will monitor them.

the past 2 days have been difficult emotionally.

I am having a moment where I am wondering "why us???".

I have two children going through something that most people will never have to deal with in their whole entire life.

Well at least writing this has got the tears flowing.