A massive realisation

Hello Dear Friends,

2019 has been one of great personal growth for many in our household.

Tom has begun his secondary schooling at a place where he barely knew anyone.
He has made friends, sporting teams and extension classes in lessons.
He has also shown them that HE IS Tommy and HE IS active and that he DOES NOT STOP talking!

Amelia has exploded in confidence, attitude and ideas on what she wants to do and when.
She still has moments of severe anxiety over situations and how/when/where/why we are going to do or achieve anything we have planned. But they are not as regular anymore.
She is extremely happy and DOES NOT STOP talking.

I have found a purpose to leave the house daily and help others, while they are also helping me in return (both openly and silently).
I have made the choice to give up alcohol and bad food indefinitely and I feel amazing for it.
My day is not quite adjusted yet to include rest, but I hope with time, I will learn to include it.
I have pushed through a barrier of social anxiety that has been slowly building for the last few years and am talking, smiling and learning names in social groups that I have always stood far away from.

Scott is his kind, funny, helpful, usual self.





Last week I watched Scott partner Amelia at her Debutante Ball.

As they both walked (and wheeled) out, I looked at the previous 3 months of research by Amelia.
Her dress.
Her hair,
Her make up.
All researched by herself on her ipad...............
With hands that can barely function anymore.

I saw a Father containing the pressure of this moment and the importance of his role.
I saw his mind filled with the dance steps that were about to come, crammed between the stress of learning and studying them.

Then I saw him look down at Amelia as they stopped when they reached the end of the initial walk.

The look could only be described as proud, admiration and pure love.

As I looked around at the many family members and friends that had paid a lot of money to attend, I saw tears, tissues and pure love directed towards those 2 people that were currently on stage.

I looked at Scott and Amelia and felt relief.

Relieved that we had succeeded in achieving so much for this night.

But I also felt an overwhelming surge of emotion that I could not understand or describe.

As 17 more Debutante's made their way out individually, the love, acceptance and support from their own family and friends was an honour to witness.

For the past week, I have been extremely tired and a little flat in my mood.
Many of you would know about how I struggle with how to deal with my emotions after a large event concerning Amelia.

Should I have cried?

I have felt like crying everyday since The Deb..........WHY?

The overwhelming surge of emotion has been still lingering around me and I have found myself confused and almost disorientated with myself.

I am very good at knowing myself through analysing and processing and accepting my feelings in the last few years from writing. I find answers and solutions that way.

This one took a long time learn.

Once I realised the answer, I felt a wave of relief, happiness and contentment.

In my previous blog, I spoke of my two mantra's concerning Amelia and just some of the amazing moments that have been added to her life through so many hundreds of people.

Over the past 9 years, many of you have followed the journey inside my head from the very beginning of fear, sadness, acceptance, anger and hope.

(This is the link to the previous blog.......
https://ameliasproject.blogspot.com/2011/02/amelias-project.html?fbclid=IwAR083Eo4hVAh9fVNLBsw5nHx2MNYx2a4woZU_c6vntVWHnOW-PY5mBYOVvY
All of the entries of my personal journey accepting Amelia was Terminal in her disease are in the Archive section down the right hand side. Start from the bottom.)



But this was a feeling and realisation that I had never experienced.

This was for the two Mantra's.

For all the pressure put ON myself BY myself.

For all the planning, preparation, asking, making, doing and stress to create an amazing life for someone else, where there is no regrets at the end.................



I am at peace.



I am happy with what has been achieved.


I realise that I looked at Amelia and saw everything in that moment that I set out to achieve in January 2011.


Her life even over the last 16 years flashed quickly through my mind.


Amelia IS having an amazing life.


And I will definitely NOT have any regrets at the end.


No more pressure.

Just Pure Love.

xxx

Amelia 2019 - allow 20 minutes!

(I would like to know how many people actually see these entries.
Please click like on this blog entry on Facebook if you have been able to see it.
Either my own page or Amelia's Project page.
Here is the link if you have not joined Amelia's Project yet..... https://www.facebook.com/groups/ameliasproject/)

Hello Friends,

I have just been reflecting that I used to write on here weekly when Amelia was first diagnosed and now I rarely get a chance.

That is good.
I am being kept busy.

It began as a place to sort out my mind and work through the difficulty of being told our child will be lucky to reach 18 years old in 2010.

We have an online community of approximately 1000+ Ataxia Telangiectasia families worldwide to share the highs and lows of this aggressive, nasty disease and I have had to read on many occasions children Amelia's age and younger passing away over the last 9 years. Suffering such indescribable pain and mental anguish, I have had to block her future out of my mind and focus on the present.

This page and the previous blog page (which had 250 entries) have shown my deepest sadness in the beginning and other various stages.

My fear, as the disease is genetic, waiting for 3 year old Tom's test results, because the disease starts taking away a child's ability to walk at 2-3 years old.
Talking becomes very difficult to understand.

At first I thought the fact that intelligence and feelings is untouched was awesome.
But now I think it is incredibly cruel.

Amelia gets very upset when she sees home movies where she is walking, dancing and running.
We have to turn them off.

The previous blog page showed my disbelief as people started fundraising to send us to Disneyland, spend weekends partaking in special experiences, converting our car so Amelia could drive her new electric wheelchair into it as the disease took away her ability to walk by age 9.

My negative thoughts allowed some positives in.

By creating the mantra's
"An amazing Life" and
"No regrets at the end",
I was able to create and live for a much stronger purpose in this one lifetime I have.

Amelia is not the only child with a horrible, disease/disability/health issue, but this child is ours and I need to have a reason why that is. To create an amazing life for her and show others what she is teaching us.

Over the years I have taken great pleasure in celebrating Amelia and I being chosen for a TV commercial, me being asked to go on the morning show The Circle with Chrissie Swan to have a make over and speak about A-T to Australia.

Celebrating successful test results and the bad ones that show the decline in her body movements and internal organs.

The discussion/s with Amelia and Tom separately about A-T being Terminal and we do not know what will happen in the future, only after Amelia asked "Am I going to die?".
Scott was amazing in taking over with Amelia and explaining we cannot predict her journey and scientific research.
Tom went into the backyard for a long time and cried.

She has forgotten.
He has not.

The excitement of Delta Goodrem sending Amelia a video message, while she was in hospital, about her confidence in singing one of Delta's songs in front of a live audience.
A message that also told her to "Be Strong".

Meeting a "Real Mermaid" in Hollywood.

Meeting Chris Brown, Tom Gleisner and Sam Pang.

Getting Ovarian Cancer at 13 years of age and thinking "this is it" as A-T kids struggle with any chemotherapy.
Living through the longest 3 weeks of our lives of tests, a major operation, recovery and the test results.
Discovering that even though it was malignant, no treatment was needed, only monitoring.

Losing friends along the way and gaining friends for many different reasons.
Some my fault, some their's, some I am left confused about what the hell happened!

Discussions and comments from anyone in our family that I find hilarious or am shocked by!

Going to her first REAL concert to see Bruno Mars.

The MASSIVE amount of you that got behind us to help Amelia meet Ed Sheeran after Make a Wish were rejected by his management.

Amelia graduating Grade 6 and being a beautiful bridesmaid next to a stunning bride.

The massive amount of support around us, both in person and online.
I could never have dreamed that so many people would love and care so much about our Amelia.
That so many would follow our journey for so many years and cry real tears and laugh loudly along with us.
Hundreds of people that have helped me with my two Mantra's and can know they are in my heart and my mind forever.

Even something simple like making eye contact, treating her like anyone else and involving her in your own conversation/interests/life is a massive contribution.

There is so much more, but I think my greatest thing to speak of is Amelia, the actual person.

Always the sweet, caring friend.
The helper that loved close contact with children and adults.
She was never one to play with dolls and toys.
She has always loved food and conversation.

As A-T took over her body, she regressed to being quieter and apologising all the time for asking us to help her and get things and do things for her.

Amelia and Tom grew incredibly close and he recognised that "Amelia needs to laugh and smile".
As we steadily grew her confidence, she would call out "Tom! Entertain me!".
He would come running up and do silly dances and make funny faces.

They are both older now and Puberty has changed the interactions, but that is ok.

We have always been mindful of Tom and Amelia getting equal time with us and Tom not growing up resentful of having a sibling with so many extra needs and taking up so much of our time.

Amelia has now learnt, over time, to speak of her feelings.
To tell us what she does or doesn't want.
To have intelligent, analytical conversations about many subjects and create her own opinions.

Tom is exactly the same.
He just argues his point, reason and opinion more!

What is most apparent now is Amelia's defiance, sarcasm and research on whatever her current interest is.

2019 has brought a massive change to everyone in this family.
It is good and it is positive.
2019 has us smiling, happy and changing things we don't like.
It has us creating new situations to improve ourselves and using opportunities as they appear.
Amelia has also turned 16 years old.
A massive milestone.

At the moment Amelia's current interest is her Debutante Ball this coming Thursday 12th September.

Her research and thoughts are consumed by make up, hairstyles, dresses, dances etc etc etc.

She goes to sleep calling out about it and wakes up calling out about it.

A small group of parents at Amelia's special school decided our children deserve a Deb as much as any child. So they have gone to great effort to organise it and get as many donations and donated services as they can.
Their effort is commendable and greatly appreciated by this family.

Through a gorgeous friend, Amelia was virtually donated a beautiful white dress, by a stranger,  and a friend has loving sewn many jewels "on the boobs" (as Amelia asked) and another friend kindly took up the length.
Jewels are currently being sewn onto a shawl and ribbon bows onto flat shoes.

A company that helps people in Palliative care is doing everyone's make up and hair.

I never advertised this event to friends or family, because I knew we would have limited tickets to purchase.

As it was mentioned on Amelia's Project Page about her taking part in it, I began getting messages from close friends asking to come if there were any spare tickets.
This has been happening for the past 6 weeks.

I began a list that started with immediate family and Amelia's closest friends.
I filled our table.

I started a "waiting list" for those that had rung, seen me or messaged me.

Then more tickets were offered in "General Admission".
Standing Room only.

I told my waiting list this and the cost of the tickets.

98% said "Yes. I am in".

We now have 26 people coming for Amelia and to watch some of her friends as well.



It is only recently that I realised how emotional this event is going to be.



Scott is Amelia's partner.

She asked her dad to be her partner.



As each "Debutante" is individually introduced with their partner, they will be "walking out together".


Scott is never going to be given the chance to "walk Amelia down the aisle" for her wedding in her short lifetime.


On Thursday night, he will be walking her out, in a stunning white dress, to a lot of people that genuinely love her.


This is Scott's chance to walk Amelia down the aisle in a white dress.

xxx