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?

GOD.

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.

xxx

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.

So...........
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.

xxx

Amelia, A-T and friends.....

Today was Amelia's first day back at school after 5 weeks holiday.

Tonight we have had to have one of "those" discussions.
A discussion where Amelia has overheard other children talking about her A-T.

It was a very innocent conversation about Amelia having a "disease".

Thankfully she spoke to a very reliable staff member and we have been able to address the matter at home.

When I asked her if we could talk about what she had heard she replied "we will talk about it later".
She maybe needed to process the word and what she felt about it.

A few hours later I raised the subject again.

"I have not got a disease" she snapped. "you cannot catch it".

So we talked about a lot of diseases you cannot catch like daddy's diabetes.
I explained that some of the doctors call A-T a disease.
Other people cannot catch some diseases, we are just born with them.

"Well they shouldn't be talking about my A-T. It is none of their business" she snapped loudly.

I explained to her that I disagreed.
If her friends were going to understand her differences then they also need to understand A-T and how if affects her body.
We talked about how some children are shy, wear glasses, get angry easily and are very short.
Everybody has differences.
Amelia's difference is she has difficulty walking and talking.

Wouldn't she like her friends to understand A-T and how it affects her?

"No" she said." I do not want them to talk about it near me".

So we discussed the close friends who do understand her, treat her normally and she loves.
I said I believed that they do understand Amelia has A-T and she needs a walking frame to help her. They are also very patient while taling to her.
If all the children understood what A-T was then there would be no whispering or wondering.
They would just know.

Then I asked her "Do you know how A-T affects your body?".
Amelia then pointed to her head and said "there is something wrong up here telling my body what to do".
I corrected her and said "not something wrong. Just the messages get confused".

I finished with "and always remember that there will never be anything different about the clever, thinking part of your brain. That part will always work properly."

Hopefully she will become more confident in teaching her friends about Amelia and A-T.

xxx

Wow !!!

I am finally back on line after a short break.

After we arrived in Hawaii, the whole previous 2 weeks (and possibly the previous 10 months) caught up with me.
This was always going to be the "relaxing" part of the trip but I collapsed every night at the same time as the kids.
It has continued after arriving home in Melbourne.
I cannot stay awake after 7pm.
So much planning, preparation and then "living the actual experience" definately took it's toll on me.
It has also taken it's toll on Amelia.
She is very rundown and has an excema rash brought on by "emotional stress and heat".
Tom........well he never seems to use up his energy !!!!!
Scott......exhausted too.

BUT .........
we are all so incredibly happy.

You could not find a more appreciative family if you tried.

Scott, Amelia, Tom and I have just had the most amazing and memorable experience that it has gone far and beyond what we believed it would be like.

The hotels, the beautiful weather, the food, the customer service, the extremely comfortable beds......the shopping !!!!!
And the bathrooms that we have been so very, very lucky to come home to.
They are too modern and fancy for our house !!!!
They are beautiful.

The positives of the last few weeks far outweigh the negatives (talk about those at a later date) and the "warm,fuzzy" feeling we are all left with is like a drug.

Every time I think of walking in the entrance gate to Disneyland.......I cannot possibly describe my thoughts.
It IS the most magical and happiest place on earth.

The hotels, Ann, Hannah Mermaid, Mum, dad and Stuart ...... everything was perfect.

We constantly discussed that we would not have been there if it had not been for Amelia's Project.
The immense pleasure I felt writing this blog, being able to share it with everyone was powerful.

But this was all about Amelia.

Tom, Scott and I just went along for the ride.

I can honestly tell you that she loved it.
The smiles, laughter and special experiences are memories that we WILL keep forever.

Scott and I were the chaperones with a massive responsiblity to make sure only the best happened.

My dad called me "a machine", but I refused to waste time sitting in hotel rooms watching TV when we could be walking, looking and seeing.

Amelia could not have possibly achieved any more than she did.
But she has "lived" in her wheelchair for 3 weeks, so now I have to ensure that we can get her up and moving again.

Amelia's A-T has progressed further.
But I am not commenting on that now .......

It is going to take a long time to find homes for the Disneyland merchandise, clothing and shoes.
But the memories, photo's and this blog are so much more important.
It records a time when we did something so very special.
Something a lot of people will never get to do.

I can honestly say that I have no regrets and that we have only added to Amelia's amazing life.

In Hawaii I read the following quote......

Cherish the little things in your life. One day you will look back and realise they were the big things.

Stare at these words and try to look a lot deeper than just the surface.
It is actually a very strong statement that could change your whole outlook on life. Everyday life.

My friend died suddenly while we were away.
A friend like anyone has.
Kel and I used to catch up for a cuppa and a chat regularly.
Our last conversations rings repeatedly in my ears.
I wish that I had of taken more notice and participated in the conversation more.
My pathetic excuse is that we were leaving in 4 days for America.

But I gave her a kiss and a hug.
That is a happy memory I will keep forever.

I CHOOSE to cherish the little things.

I choose to cherish having Amelia, Tom, Scott and I together and remembering every single day and moment.

There is so much more that I could write but I will save those thoughts for another day.

I will finish today with some photo's, BUT first I would like to write an OPEN letter to Tom (our 5 year old son). An element of sarcasm may be detected............

To my dearest Tom,
I know that I have put a lot of weight on recently but I do not understand why you thought that other woman was me.
Scott, Amelia and I were swimming in the deeper water at the beach in Hawaii and you were playing in the shallows.
A very, very large lady got out of the water and you began yelling at her "mum....mum.....MUM".
We watched you, in shock.
Your daddy started trying to call out to you to explain it was not your mother. I understand daddy was not very loud because he was trying his best to swallow his laughter.
But no, you continued calling out and trying to follow her.
When you finally turned around to answer daddy, looked at me and looked back at the MUCH larger lady, you appeared confused.
I said to your daddy "I am not that bloody big am I?"......
And your very clever daddy roared laughing and sputtered NO !!!!
Love your real, much smaller mummy.

Now for the photo's........

Happily home with new ears and t-shirt.

After unpacking my new shoes !!!! (nothing over $30 !!!).
Personally my favorite are the Minnie Mouse ones.

And the clothes....(can you guess which pile is mine ????).
Scott is already wearing and washing his !!

All of Amelia's and Tom's Disneyland merchandise.

The new main bathroom.
AWESOME !!!!

The new shower in our ensuite.

The BIG entrance.

And the other end of the ensuite.

xx

Hawaii photo's

Just photo's today.
Too exhausted after a fun but difficult play at the beach with the kids.
(Amelia could not walk when she got out of the water).
Scott supervised Tom and carried ALL our belongings (towels, lilo, shoes etc) while I tried to support Amelia.
xxx

The sign at the beach for the last 2 days.
Other people were swimming but we did not want to risk it.
Amelia was stung by a jellyfish 5 years ago and by the screaming and red rash I think it may sting !!!!

Another stage of my shopping expedition.
So much fun bartering !!!!!!!

Because of the jellyfish we took the kids (and their new snorkel and mask) to the hotel pool instead.
I think Amelia is all ready for a swim !!!!

Tom jumped in straight away !!!

A magic jewel we discovered last night. On the way to dinner we stumbled across this amazing place right on the beach.
So we ate there and then went and sat on the sand.
Beautiful night.

At this amazing place BEFORE it got dark.

Cheeky !!!

And extremely cheeky !!!!

3 more sleeps in Hawaii and then home.

Only if you want to ........

Hello Angels,
I am absolutely horrified to ask this (or accept the offers of help) but I have been left with no other option.
Our house is apparently a bit of a disaster !!!!!
The bathrooms apparently look awesome !!!!

So apparently a small group are going to our house on Thursday.
So the co-ordinator is Jane Guinea (Scott's sister) with the help of Russell Nicholds and my dad.
Jane will be there from 10:30am Thurs.
If you want to go and help then we would be forever grateful.

The builders will still be finishing up BUT I do not mind kids going and playing in the toy room, watching TV or going in the backyard AT ALL.
(Wine for the adults is optional..... lol)

It feels soooo rude writing this.............

xxx

And just think.....you will get to see the bathrooms before us !!!!!!!

Reflection - America

This could be a dangerous part to the holiday - Reflection.

To think about what we have done and why we had to do it.

But at the moment I am finding that it is all a mixture of positive and negative.

In Anaheim, Los Angeles, the people "serving" us were prime examples of Customer Service.
Everyone was happy and completely at our disposal.
They opened EVERY door for you, wanted to assist you with ANY enquiry and never ever disagreed.

This is where we began to learn about the "tipping" service which is virtually mandatory anywhere in America.
If they give good service you have to pay a fee of "gratuity".
Sometimes it just appears on your bill.
Other times you are just expected to leave the appropriate amount.
The appropriate amount is 15 - 20%.
So if you spent $100 at dinner it is expected that you leave $15 -$20.
Unheard of in Australia.
And very difficult to part with that kind of money here now.
The most that we have left so far is $10.

But some people do not work for a wage.
They give good service, they work for their tips.
Very different to home.

So I chose to appreciate their happiness instead.
NOT that they expected money for it.

Inside Disneyland there was happiness constantly with NO expectation of a tip.
They do work for a wage.
They call it "the happiest place on earth" and I can say it definately is.
Not only the workers but ALL the visitors were happy too.
It was just such a beautiful place.

Where else would you happily line up for a ride for 40 minutes ??!!!
You didn't care because the "line" was a ride within itself.
Everyone walked through a process (for 40 minutes) before they climbed on the ride.
In the beginning we would not line up because the wait was so long.
We learnt very quickly that this wait time is "standard".
Then we saw how fun the wait can be.

In 9 days we did not see everything in Disneyland, California Adventure or Downtown Disney that we could of.
We also know that we could not have possibly squeezed anymore in.
Morning, lunchtime, afternoon and evening were extremely busy.
For 9 days !!!!!!!

My memories of Disneyland (and hopefully Amelia's, Scott's and Tom's) will be lifelong.
It is a magical place.

Before I finish I would like to comment on other members of the "public".

Almost every single person, young AND old, had Mickey Mouse ears or similar on.
Men with tattoo's wearing Donald Duck t-shirts.
20 year old men wearing a Goofy hat.
Women of all ages wearing Minnie Mouse Clips.

Every single person had something "Disneyland" on.
You actually felt out of place with "normal" clothing !!!!

I loved it !!!!!!
It helped set the scene.

Anyway, more analogy tomorrow.
Dinner time in Hawaii.

xxx