(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
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