Lots......

America is now booked.
I am finally able to say a very special thankyou to Nic Spicer.
I have not had any contact with Nic since 1992.
Because of everything that has happened recently she has chosen to come back into our lives.
While pregnant with her second child, she worked tirelessly to try and get us cheaper flights for our "dream trip" to Disneyland.
Because of her persisting with contacting various people in the industry she was able to achieve something which is so much more heartwarming.
The wife of someone in a high position of Flight Centre saw our DVD that circulated around the Internet. (It is now on the right hand side of this Blog).
Nic was contacted by this husband and wife to offer their assistance with our holiday.
By choosing to book our entire trip through Flight Centre, Nic was assured that this "couple" would pay $5000 off the total.
Yesterday it happened.
Thank you from the bottom of our hearts to Nic and whoever this man and woman are in Queensland.
Special, special people.

Tonight a man came around to give Amelia her very own laptop computer.
It will be used at school everyday for all Amelia's school work.
We will also be able to purchase special "disability" software to assist Amelia with her learning.
This was all organised by Cindy Reed through an organisation called "Beyond Disability". I have not seen Cindy since 1985!
We have been given a brand new computer, with brand new (up to date) software and a modem to enable us to connect to the Internet anywhere, anytime.
All paid for by these very kind people.
Thank you so much Cindy and Beyond Disability.

But there is three people that I have been wanting to thank for so very, very long now.
I know that there are so many of you out there (and I will work my way slowly through the list) but these 3 girls have been unbelievable.
I cannot describe the work they have put in. The emotional energy, support and hours has been mind blowing.
Jemimah Simpkin, Michelle Clark and Belinda Plunket .......... you are truly angels.
There is absolutely no way I am going to ever be able to repay you...........

Finally.
It has been a very difficult week with Miss Amelia.
I am hoping with ALL my heart and soul that her ability this week is due to the emotional upset of the car accident.
Another decline....so soon....... well lets just say we have struggled this week.

xxx

In the next episode........

On average, 250 people a day are reading THIS Blog.
So I thought I might try a new technique.
Tell me what you think............

"Tune in for the next episode to see.......
Will Amanda's new car be purple ???
How will the children overcome the nightmares of the horrific accident ???
and in BREAKING NEWS ........ hear all about Amanda falling flat on her face at the shops today".

(Any hint of sarcasm is for the writers amusement only.)

xxx

Worried in a comical sense......

Tomorrow we pick up my new car.

I have gone for a NEW colour.
I thought maybe it would be like a fresh start.

Maybe it could help the kids and I move forward.

I looked at the colour charts at Frankston Nissan.
I CHOSE from the colour charts.

The colour I believed I chose was charcoal grey.
They call it "flint".
But everyone around me (Scott, the caryard and Insurance) are calling it.........

PURPLE !!!!!!

I am now sitting here with a frown on my face wondering WHAT my new car is going to look like tomorrow ??!!
Charcoal grey and purple are two VERY different colours.
Scott and Amelia think I am colour blind !!

So the point of tonight's BLOG ?????
If you see a PURPLE Nissan X-Trail driving around........
please wave !!!

xxx

Our "Trip of a Lifetime"......

Today the money was paid.

Thanks to Amelia's Project we are going on a family holiday that will create memories forever.

During the month of October we will be staying at the best places we could find and doing the most amazing things.

Many of you have been very interested in WHERE we have chosen to stay, so I will now give you some idea of our Itinery (with direct links to the accomodation sites !!!).
Personally I had a very firm idea of what I wanted from the hotels and overall we are very excited by our final choices........

1. Anaheim (Los Angeles, America)
9 nights at The Hyatt Regency in Orange County.
It has a separate bedroom to the living area (1 bedroom suite) and a shuttle bus to Disneyland every 30 minutes that is wheelchair accessible.

LINK : http://orangecounty.hyatt.com/hyatt/hotels/rooms/room-description.jsp

From here we plan to go to Disneyland, Downtown Disney, Universal Studio's and shop. Hopefully there will also be a day trip to San Diego for Sea World and/or the Zoo.

2. Las Vegas (America)
4 nights at The MGM Grand SIGNATURE Hotel.
This is not on "The Strip" but is one of the only hotels which has no casino or x-rated venue. The rooms are massive (twice the size of Anaheim) and there is a monrail directly outside to take us the 3 minutes to the strip. Our room is all in one and called a "balcony room".


LINK : http://www.signaturemgmgrand.com/

I have also been researching activities for the kids while there. It is now not only a place for adults but a HUGE place for kids !!!!!

LINK : http://www.vegas.com/attractions/kids.html

And finally Waikiki, Hawaii.
All the hotels I enquired about were already booked out.....except this one.
I think we definately saved the best till last.
The main picture on the first page of the website will be OUR room........
See what you think.

LINK : http://www.astonhotels.com/resort/overview/aston-waikiki-beach-tower/?propertyGroupId=45468

As I walked out of the Travel Agency today I felt a massive wave of relief and excitement.
It is done.
You wanted us to do this and we are doing it.

Thank you so very much.

xxx

New Game Plan

Amazing.

Woke up this morning after a weekend of cleansing and it was time to be pro-active again.

Have decided that Amelia is not doing very well.
I am worried that she is getting worse again.
Speech and motor skills are definately deteriorating.
And unfortunately we are seeing Telangiectasia's in Amelia's eyes for the first time.

This may be all part of the A-T journey, but as parents we still need to try and delay anymore onset of the disease.......NOW.

So my motto today has been "new game plan".

This week I will be making "a plan of attack" for each week.......every week.

We need to do more, as well as live each and every day to the best we can.

xxx

Rock Bottom

This weekend I went away.
I went away by myself because I knew I needed to sort through some emotions that were bottled up.

I slept, watched DVD's and cried.
Well sobbed actually.

Having a child with a degenerative illness is gut wrenching.
Watching it happen everyday.......well, you cannot possibly describe that.

This weekend was in response to coming off  "auto pilot".
Amelia's Project has kept my mind busy, busy, busy.
Then it stopped for 2011, because it had to.
Then the car accident has had horrible effects on Tom, Amelia and I.
Planning the "dream" trip to Disneyland could not possibly run into any more problems.

Saturday night I hit rock bottom.

You do not need to know the details but I was not good.

Today I woke up and felt numb, but at the same time, cleansed of all the emotions that have been choking me the last couple of weeks.

I have come home ready to continue our battle.
The journey that is A-T.

On Tuesday we will finally pay the deposit on our trip to Disneyland.

Tomorrow I will selfishly keep Amelia home from school and cuddle her and Tom all day.

xxx