Sunshine Coast

A few months ago I decided to plan the next "goal" after Disneyland.

I have a beautiful friend who lives in Queensland with her four daughters.
I have always wanted to come and visit.
So here we are !!!!

Rewind......
Leaving Melbourne was slightly stressful.
The wind and rain blowing us across the road was scary.
Then we leave our car at the parking bay and I notice a huntsman spider running into the boot of my X-Trail.
My efforts to kill it failed.
So if you hear of a purple car running off the road on Wednesday (where the occupants of the vehicle are screaming) it is just us.

Jetstar were very helpful and assisted me constantly.
Amelia took the "lift" to the plane so she did not have to climb all of the stairs.
The kids behaved beautifully on the plane, except for the "tickle fest" they decided to create !!
Tom entertained all of the passengers with his excited "weeeeee" at take off and landing.

It has been such a wonderful visit.
The house is ALL girls but Tom has coped extremely well.
The girls are wondering when he gets tired though !!
The lifestyle here suits him perfectly.
Beach walks, early mornings, other children to play with and lots of attention.

Amelia also loves being here but finds the heat and limited sleep difficult.
She has been grumpy and physically shut down a few times.
But she has also been giggling and having lots of "girly time".

The weather has been all over the place.
Extreme heat and lots of rain.

So peaceful though.

Yesterday we were taken to my ideal environment.
A house in a valley, surrounded by forest.
So surreal.

Our hosts have been extremely welcoming.
They now have a new name.
They are no longer the supermodels.
They are The Cullens !!!
(perfectly explained by their sister/aunty)

You walk anywhere with this family and people stare in shock.
People walk past and second glance.
Absolutely fascinating to watch.
And none of them can see it.

Me ?

I have enjoyed the soul searching, the conversations and the rest.
The alcohol on Saturday night contributed to a fun night.
I am so very proud of Tom because his behaviour has been mature and ..... well, good.
Amelia has had another experience that she has loved to contribute to her amazing life.
We are all missing Scott but know that this 7 days has been a wonderful way to begin 2012.

Speak soon.

xxx

Female day and Queensland.....

Today has been a female day.
100% female day.

Tomorrow the kids and I go to Queensland.

Yes.....you heard that correctly.

I will be pushing a wheelchair and pulling a suitcase while calling out to Tom to "stay with us!!!".

But today I have been flat and emotional.
Thank you very much to the female "cycle".

But I am also having moments of noticing Amelia's decline.
The ability to do things is slowly disappearing.
Well actually quickly disappearing.
18 months and most things are now too difficult for Amelia to attempt.

Walking around a children's playground today was impossible.
She must hold my hand and stumble frequently.

She can no longer walk unaided.

The bruising she is covered in at the moment is evidence of the falls and her enthusiasm for life has taken a battering lately.

I can no longer do a "food shop" with Amelia.
It is impossible.
My father-in-law kindly looked after the kids today so that I could fill the cupboard and fridge.

My rule has always been to be happy, enthusiastic and encouraging while around Amelia.
If I am happy then she will be too.

Be recently that has been difficult to remember.

The timing of tomorrow's holiday could not have been better.
Amelia, Tom and I adore the family that we will be staying 7 days with.
My parents are also paying for this "getaway" so it makes it even better.

But I think I will need to search for a new approach for 2012.
Something which keeps me positive.
Something that helps me remember that I am responsible for creating an amazing life.

So think of Scott eating his bachelor pad food (frozen pies and pizza while watching past seasons of "sons of anarchy") and the kids and I enjoying warmth and beautiful friendship.

I just have to get these tears out first that have been sitting, waiting, all day......

xxx

Last Try.......

Some of you may remember our 'beach' day in Hawaii at the end of October.
Amelia's legs collapsed underneath her while we were still on the sand and it was a mammoth effort for Scott, Tom and I to get her back to the hotel.

Today Scott started back at work after having the Christmas/New Year period home with his family.
I thought it would be exciting for the kids to go to our local beach because it is something we rarely do.
It would also distract them from their daddy starting work again.
I have also been thinking about how I have one child who DOES NOT have A-T and HE needs to experience things that other children do.
We spend a lot of time at home.
We have a TV on a lot because Amelia can sometimes cope with not much else.
The guilt of Tom's "daily life" has been building over the last few weeks.
I thought that HE needs to go and Amelia and I will deal with it.

EPIC FAIL.

After searching for motivation and enthusiasm (I hate sand) we began the drive to the ocean.
Amelia mentioned that she did not want to go because she gets too tired.
I suggested to her that "this would be our last attempt".
I just wanted to try one more time.

It was slightly difficult supporting her down to the water.
I was able to sit her at the waters edge and she was enjoying the experience.
When it was time to leave was when it all turned upside down......

Amelia and Tom were covered in sand so I suggested they enter the water to wash it off.
Tom had spent the previous 75 minutes in and out of the water so it was not a problem for him.
Amelia refused to do it.
Then I realised she was neither confident or physically able to do it.

The walk back to the car was difficult.

Over the next 90 minutes Amelia "shut down".
Her body would not work and she struggled to talk.

I opened a beer at 11:45am.
I figured I deserved it.

On so many levels I am upset, annoyed and frustrated at the moment.

We cannot even go to the beach now........

And to see her sobbing and trying to verbalise "I am so exhausted" is extremely emotional for a mother when you know it is only going to get worse.

So tonight I have had lots of chocolate.
Sometimes it is the only answer........

xxx

New Years Eve 2011

For the first time ever I just want a very quiet New Years Eve.

I have always enjoyed a party, a drink and a big bang to see in the New Year.

Not this year.

It is not because I am sad, I think I just want to contemplate the year our family has experienced.

I would "hand back" Amelia's A-T diagnosis in a heartbeat BUT I would never "hand back" the experiences and friendships that have grown and been created.

I am a different person now.
A person I am prouder of than my previous self.

Who knows what 2012 will bring.
It will bring challenges and new accomplishments.

A-T will unfortunately keep it's ugly downward slide.

But we will roll with the punches and try with all of our strength to appreciate and enjoy every moment we have together.

Have a joyous and safe New Years Eve everyone.

We will be having a "mock" party for Amelia and Tom at my parents house.
The children have chosen their party props and Amelia is intent on wearing her "party dress".

Thank you for sharing this amazing year with us.
We look forward to continuing, with each and every one of you, the journey next year.

An extra special thank you to Jemimah.
This year would never have happened with out you.
You are a very special person.

xxx

2011 The finale

As I think about the coming weeks, I see many things happening.

Tomorrow Amelia finishes Grade 2 and both children will be home for 6 weeks.

In the next few days we have a special limousine ride for Amelia with some of her friends, Christmas light driving, movies to celebrate the beginning of holidays and Christmas Day.

Even though my thoughts on Christ and God may be alternate, I do believe Christmas Day is special. It is a day where love, family and life are appreciated. We are able to spend time with people we are closest to.

Tonight I would like to finish my summary of 2011 by showing my verbal appreciation to all of you.

Thank you for loving our daughter.
Thank you for sharing our tears and emotions.
Thank you for sharing our joy in her smiles.
Thank you for appreciating our need and our want to give her the most magical, amazing life.

And.....thank you for supporting ME.
Thank you for accepting ME and my emotions this year.

I continue this blog for YOU and for ME.

Scott, Amelia, Tom and I would like to wish you all a wonderful and special Merry Christmas.

And please.....just for me........
take 1 minute on this very special day to sit back and look around you.
Think about all that you have in your life......
And it is not materials.
It is the people.
Once they are gone.......they are gone.

2012 will bring new challenges and obstacles, but is guaranteed of memories and experiences that will stay with us forever.

Life is what you make of it.

xxx

2011 Part 3

In the past 12 months I have become a totally new person.

My future, our future, the future of our family is now different.

It is expected that when a person gets married and has children, there is a set pathway for the future.

Amelia's diagnosis of Ataxia Telangiectasia 12 months ago has guided us off the normal pathway.
We now have an 8 year old daughter who cannot do homework or after school activities. She is unable to attend school everyday, ride a bike or dress herself.
Any independence will be slowly taken away from her and she will become totally reliant on those around her.

My degree in Early Childhood now appears obsolete because I am needed everyday.
Amelia needs me everyday......for everything.

The rollercoaster of emotions are now my friend.
I have learnt to "roll" with it rather than fight it.

Amelia will not be calling us to get picked up from the pub.
She will not be getting married and having children.
We will be grateful if we still have her in her twenties.

12 months of accepting everything has changed.
Our future is now very different.

BUT ......
and this is a very BIG but.......

We have learnt the importance of each day, each achievement and every smile.
We have learnt the true meaning of smiling, laughing and creating memories.
We have learnt that "life" is what we make it and can be amazing no matter how short.

You suddenly realise that if it all ended tomorrow........would you be happy with the life that you lived ?
Would your husband, partner or friends have happy memories of times that they spent with you ?
Would your children remember dancing with you or that you were always doing jobs?

In the past 12 months I have taken on the responsibility of creating an amazing life for our family.
Small things, big things.....very,very important things.

No more negativity and whinging (although they still appear occasionally).

As many of you know, a beautiful friend of mine died recently.
She had no warning.
And she was just beginning a process of self discovery.......finding real happiness.
We have been given warning.
It is not fair but we have been given the chance to appreciate life from a new perspective.

I do not have time to waste worrying about being self concious anymore.
I do not have time to waste wondering what people think of me anymore either.

There is something so much more important in my life to care about.

Living.

Sunny days, hearing the rain, a mocha coffee, a cuddle or finally seeing Breaking Dawn Part 1.
It all takes on a new meaning.
An appreciation that life is short and to enjoy every single moment.

I want to have fun.
I want Amelia, Tom and Scott to have fun.

One of the biggest realisations in the last 12 months though is the relationships with others around us.
Friends, family, neighbours, strangers, local shop owners, teachers and other parents.

Friendships, conversations and relationships are taken to a new level.

I cannot explain the deep, powerful bond I feel with so many of you now.
Some people I did know before and some I did not.

The protective shield I often feel surrounding us is so overwhelmingly strong.

The other families who have been handed the curse of A-T have become friends, an information source and a sympathetic ear.
Each child is so different but with so many similarities.
All around the world we lead different lives but are ALL watching our children deteriorate in front of us.
But a lot of us speak of the appreciation of everyday.

And finally.......
In the last 12 months I have had one very firm thought.

Amelia Grace Nicholds WILL have the most amazing life.
She will be surrounded by positivity and happiness.
I WILL NOT let her feel the pain and sadness that we feel around her.

No regrets at the end.

.....to be continued.......

xxx

2011 Part 2

I have been wanting to continue my summary of 2011 for well over a week but have been so sick in the past 7 days.
I guess, in a way, the year has caught up with me and all of the stress and negativity has taken over my body.
I am still not well but at least I can get up out of bed now.

Tonight I would like to list all of the amazing experiences that people have organised for us.
Hopefully I remember all of them.
There has been a lot.
Every single one has left a wonderful memory that will stay with us forever.

It all began with a gift registry set up by the very kind Shannan.....

1. Build a bear (we came home with 5 !!!!).
2. Hairspray the musical with a group of gorgeous ladies. We also met the two main cast members afterwards.
3. The Herald-Sun did an article on Amelia. It was written by Daniel Hoy.
4. Angie Baxter, a professional photographer, took the most amazing photo's of us. These photo's are now used for "Amelia's Project" and another media article used one later in the year.
5. Take 5 magazine did an article on "our family".
6. Met some beautiful women from "Ebony's will to walk". They gave us advice on setting up Amelia's Project.
7. Set up an Amelia's Project Committee.
8. The very first Amelia's Project meeting. So many people and I was a shaking mess. Jemimah was renamed the "power machine".
9. Melbourne Zoo. The most memorable experience of feeding giraffes, a seal and lions.
10. Our first A-T clinic in Brisbane. We learnt so much about Amelia's new diagnosis and came home with our first feeling of HOPE.
11. Our first circus. Gorgeous Anna took the kids and I to see a spectacular show.
12. A very fun evening for the "Royal Wedding".
13. 350 people came to MacDonalds between 5:30-7:30pm on a Tuesday night. The most they have ever seen for a fundraising night. $1000 was donated by Macca's and the beautiful Kelly also did a HUGE raffle.
14. We got our first fishtank. We have managed to kill all of the fish, except one. So we have decided he is the winner of "survivor!!!!".
15. Met the beautiful Holly for the first time. She read about us in New Zealand and insisted on flying over to just meet us. Shell came out to lunch with us just to make sure she was not an axe murderer !!
16. Amelia begins a fortnightly painting class with a professional artist. She wanted to donate her time and expertise to Amelia.
17. Scott, Myff (Amelia's special physio) and I fly to Brisbane for a 1 day conference on the research occuring into A-T.
18. The Circle TV show has me on for a makeover. They also question me on Amelia and A-T.
19. The Amelia Night at our local RSL. HUGE. $52,000 raised in that one night.
20. Our local fire brigade holds a sausage sizzle and raises $1000.
21. Our local pharmacy holds a sausage sizzle and raises $750.
22. Danny and Donna take us to the most magical Fairy Park far, far, far away.
22. Donna and Shane treat both kids to a Harley ride.
23. Have our first trip to the snow and are given an awesome cabin to stay the weekend in. Some awesome friends also chose to come with us.
24. Attend our first Melbourne Brashat Gala Night. We hear people speak about research into A-T.
25. Both kids are spoilt at the local Fire Brigade Station and given a "trauma bear" and certificates to be volunteer fire fighters.

26.DISNEYLAND !!!!!! Oh and Las Vegas and Hawaii!

27. The most unbelievably beautiful bathrooms are created for our home while we are in America. One that is easier for Amelia to shower in and a spa bath to relax and soothe her tired body.

28. This week "our" limousine driver from "Aberlene limo's" has insisted on picking Amelia up at home time from school. He has asked her to choose 9 friends and they get to drive around in this luxurious car and returned to our house after 1 hour.

We have had an ipad and a walker delivered anonymously to our front door.

Chocolates, wine and flowers are a happy discovery when I am having a sad day.

The donations collected and offered for the Amelia Night at the RSL were unbelievable.

Many people arriving on our doorstep and insisting on giving us money.
People sending money and gifts in the mail.

(If I have forgotten anyone or anything I am very, very sorry. I have written straight from my diary!)

Everyone also began sleeping with onions next to them and True Blood became the TV show to watch for vampire porn.
Everyone heard my opinion/s on life, friends, accepting support, grieving and God.
I have not yet written the one on "reaching orgasm" as I promised !!!

I will continue my summary another night but I will leave you with a rather funny image........
After showering Amelia the other night, she insisted on running out to Scott.....naked.
She turns around so that her back was facing him.
She then began wiggling her bottom and singing
"I'M SEXY AND I KNOW IT !!!!!!!!!!
WIGGLE, WIGGLE, WIGGLE, WIGGLE
YEAH !!!".

Bloody Hysterical !!!!!!!!

xxx