Wednesday, 2 November 2011

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.


Tuesday, 1 November 2011

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.

The new shower in our ensuite.

The BIG entrance.

And the other end of the ensuite.