Wednesday, 21 December 2011

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.


Monday, 19 December 2011

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.


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. be continued.......


Sunday, 18 December 2011

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 !!!!!!!!!!
YEAH !!!".

Bloody Hysterical !!!!!!!!