How Would You Feel?
By Tommy Nicholds
11 Years Old.
How would you feel if your sibling could not walk for the rest of their life?
Well, my sister can't, because she has a brain disease by the name of Ataxia Telangiectasia.
Yes, It's a mouthful!
It is also commonly known as A-T.
Today I am going to be talking about how it affects my life and also how we can find a cure.
Over the last year and 3 months, Mum and Amelia, my sister, have gone into hospital at least 5 times, which is very hard being separated from each other.
The occasion that I will be talking about today was in June 2016, when Amelia was diagnosed with Ovarian Cancer (which is one of the complications of A-T).
I don't know the exact date, but it was a Friday night after school, and I was told to got to my Poppy's house, when the school bell went.
Why?
Mum always picks me up.
(Around June 2016)
When I got to my Poppy's house, they sat me down and we had a discussion with Amelia and Mum on FaceTime.
Amelia was really sick and no one knew why.
Mum and Poppy seemed scared.
Amelia was crying about the tests they were doing to Amelia.
That night I was very worried, because no one knew what was going on.
Everyone seemed worried and scared.
The following next week, the doctors found out that Amelia had a 14 cm wide tumour, which was full with 1 Litre of Fluid.
I didn't know much about cancer, but I still broke down in tears , because I knew it was dangerous.
That week I was very down and emotional because I didn't get to see anyone in the family, since dad still had to work.
I couldn't help but cry in bed some nights.
I really love Amelia and always have.
I am only 11 years old.
My teacher was very supportive that week, because I would come in each morning and fill her in with all the news.
During the day she would sit our whole class down and explain what was happening with Amelia and then all the other kids in my class would share their stories about families and friends that have experienced cancer and other scares.
It was a week before my 10th Birthday (2016), and I was begging mum to come home for the weekend.
I began begging mum to come home for my 10th birthday weekend.
They did, which restored my happiness.
(I now Know how much work this took)
An hour before my birthday party, Mum explained that Amelia had become a lot worse.
They had to leave straight after the party to return to RCH.
I was devastated and it was in the back of my mind during my entire 10th birthday party.
Mum and Amelia are about to leave indefinitely.
Amelia may die from this.
Will Amelia return from this operation that everyone is so scared about?
Two days later, doctors performed an operation to get the massive ovarian tumour out of Amelia.
People all over the world wore pink to show their support of Amelia.
That day I was feeling nervous about Amelia and nervous and this operation.
I began to channel my happiness into seeing all of my friends wearing pink at school, and seeing Amelia and Mum later that week.
The Operation was a success.
Now I am coming back to the present day, where Amelia wakes up smiling, laughing and playing with her friends, every single day.
That to me is true inspiration..
Thankyou for listening to my story about our family.
I hope I made a difference.
Amelia is amazing.
Tuesday 8 May 2018
Tuesday 1 May 2018
Hello Friends,
I recently published this blog without finishing it properly.
I would like to finish it properly now!
We are all travelling really well right now and I am so incredibly proud of us all.
We are surviving and all feel SO loved.
(I will update about Amelia's hands and NOW feet at a later stage.
Degression and A-T are savage and nasty.)
Please enjoy some ok stuff for now.
I recently passed someone so bitter and mean, in the street, that it made me actually happy.
They are gone out of our lives now!
Toxic people are now gone.
100% gone!
Scott has just changed employment.
It is a role that took 2.5 months of tests and interviews to get and we are all incredibly proud of him, for surviving "the cull".
Scott has always had an amazing logic, street intellect and vibe.
It is a job that he will be able stay with for life.
Amelia has adapted to her new carers so well and we are all so incredibly proud of her.
(and we all really like them!)
As all of you know, I have been her main carer, since she was born.
2003.
Last year I began speaking to her about the unnatural connection we had developed.
She agreed quickly.
She was 14 years old and had never been separated from me.
She needed independence and loving connections to others.
I needed to find me again.
Amelia has fallen in love with 3 of her carers.
To watch and to listen to them has been amazing.
I know and hear that they feel the wonder of Amelia.
They have a lifetime to remember her and they are showing the impact of her on their souls.
I feel honoured to share the gift of Amelia.........
Tonight we were watching an episode of "The Voice in Australia".
The episode discussed the "medicine" of music.
People were discussing how music helped them through a death, bullying or love heartbreak.
I paused the episode to explain to the kids about how music has helped me in recent years.......
I know how I have spammed you all with music when I am really struggling........
But I really want you to close your eyes and imagine my explanation of each individual in our family tonight.
Especially when we are in a really good place and hope to stay there....
Many of you will have heard all of these already......
Get a cuppa (or wine!) and survive the ads.
Imagine the minds of our crazy family!
My message for Amelia....
It was when I finally realised that she will show me an amazing life guided by herself...... No matter how short.
https://youtu.be/jgfxmlAZUWU
My message for Tom.......
https://youtu.be/jpTYG_Sqqdg
(We are seeing 90% evidence of siblings RUNNING when 18 from a family with a disabled child. Their own sibling. We are determined to not let this happen).
From Tom....
On my own page.
"He gives everything to others" Tom said
https://youtu.be/xpVfcZ0ZcFM
On my own page, a message FROM Scott to me.....
https://youtu.be/UfmkgQRmmeE
A message from me TO Scott.....
https://www.youtube.com/watch?v=lp-EO5I60KA
BUT
For all of you.....
This one.
https://youtu.be/bwB9EMpW8eY
I will never forget this song during Amelia's cancer diagnosis.
3 weeks of all of you keeping me upright, functioning and demanding answers.
(Code Grey was also threatened when they were going to do wrong by her!)
https://youtu.be/bwB9EMpW8eY
These 2 songs have been Amelia's in the last 2 years (12-14 years old) to get her through hard times.....
https://youtu.be/xo1VInw-SKc
and
https://youtu.be/xo1VInw-SKc
THESE ARE THE NEWEST ONES....
(Tom has requested that Amelia get Bluetooth headphones, because he believes hearing them 89 times is quite sufficient).
https://youtu.be/gdjR2lvIfJ4
(she has secretly fallen for Zac Effron)
and.....
https://youtu.be/CjxugyZCfuw
This one is quite profound.
It is about anyone with "difference".
But when I asked Amelia to choose her favorite song of life.......
She chose this one....
https://www.youtube.com/watch?v=t_YXSHkAahE
Quite profound really.
She always chooses or says the things that blind side me.
I seem to absorb each child around me and "their meaning" and "purpose" a lot!
Life as a parent?!
Recently Amelia said to a new carer incredibly innocently....
" Apparently I am famous. I never meant for this to happen".
Nor did we Miss Amelia.
But when someone so incredibly profound, innocent, knowledgeable AND
MIND BLOWING as you arrives, we need to speak about it.
Your messages are always profound and mind blowing.
You have shown and proven so much in the past 8 years.
We have no choice BUT to share your words.
We may not be religious, but we can still listen.
Thank you for taking the time to listen.
xxx
I recently published this blog without finishing it properly.
I would like to finish it properly now!
We are all travelling really well right now and I am so incredibly proud of us all.
We are surviving and all feel SO loved.
(I will update about Amelia's hands and NOW feet at a later stage.
Degression and A-T are savage and nasty.)
Please enjoy some ok stuff for now.
I recently passed someone so bitter and mean, in the street, that it made me actually happy.
They are gone out of our lives now!
Toxic people are now gone.
100% gone!
Scott has just changed employment.
It is a role that took 2.5 months of tests and interviews to get and we are all incredibly proud of him, for surviving "the cull".
Scott has always had an amazing logic, street intellect and vibe.
It is a job that he will be able stay with for life.
Amelia has adapted to her new carers so well and we are all so incredibly proud of her.
(and we all really like them!)
As all of you know, I have been her main carer, since she was born.
2003.
Last year I began speaking to her about the unnatural connection we had developed.
She agreed quickly.
She was 14 years old and had never been separated from me.
She needed independence and loving connections to others.
I needed to find me again.
Amelia has fallen in love with 3 of her carers.
To watch and to listen to them has been amazing.
I know and hear that they feel the wonder of Amelia.
They have a lifetime to remember her and they are showing the impact of her on their souls.
I feel honoured to share the gift of Amelia.........
Tonight we were watching an episode of "The Voice in Australia".
The episode discussed the "medicine" of music.
People were discussing how music helped them through a death, bullying or love heartbreak.
I paused the episode to explain to the kids about how music has helped me in recent years.......
I know how I have spammed you all with music when I am really struggling........
But I really want you to close your eyes and imagine my explanation of each individual in our family tonight.
Especially when we are in a really good place and hope to stay there....
Many of you will have heard all of these already......
Get a cuppa (or wine!) and survive the ads.
Imagine the minds of our crazy family!
My message for Amelia....
It was when I finally realised that she will show me an amazing life guided by herself...... No matter how short.
https://youtu.be/jgfxmlAZUWU
My message for Tom.......
https://youtu.be/jpTYG_Sqqdg
(We are seeing 90% evidence of siblings RUNNING when 18 from a family with a disabled child. Their own sibling. We are determined to not let this happen).
From Tom....
On my own page.
"He gives everything to others" Tom said
https://youtu.be/xpVfcZ0ZcFM
On my own page, a message FROM Scott to me.....
https://youtu.be/UfmkgQRmmeE
A message from me TO Scott.....
https://www.youtube.com/watch?v=lp-EO5I60KA
BUT
For all of you.....
This one.
https://youtu.be/bwB9EMpW8eY
I will never forget this song during Amelia's cancer diagnosis.
3 weeks of all of you keeping me upright, functioning and demanding answers.
(Code Grey was also threatened when they were going to do wrong by her!)
https://youtu.be/bwB9EMpW8eY
These 2 songs have been Amelia's in the last 2 years (12-14 years old) to get her through hard times.....
https://youtu.be/xo1VInw-SKc
and
https://youtu.be/xo1VInw-SKc
THESE ARE THE NEWEST ONES....
(Tom has requested that Amelia get Bluetooth headphones, because he believes hearing them 89 times is quite sufficient).
https://youtu.be/gdjR2lvIfJ4
(she has secretly fallen for Zac Effron)
and.....
https://youtu.be/CjxugyZCfuw
This one is quite profound.
It is about anyone with "difference".
But when I asked Amelia to choose her favorite song of life.......
She chose this one....
https://www.youtube.com/watch?v=t_YXSHkAahE
Quite profound really.
She always chooses or says the things that blind side me.
I seem to absorb each child around me and "their meaning" and "purpose" a lot!
Life as a parent?!
Recently Amelia said to a new carer incredibly innocently....
" Apparently I am famous. I never meant for this to happen".
Nor did we Miss Amelia.
But when someone so incredibly profound, innocent, knowledgeable AND
MIND BLOWING as you arrives, we need to speak about it.
Your messages are always profound and mind blowing.
You have shown and proven so much in the past 8 years.
We have no choice BUT to share your words.
We may not be religious, but we can still listen.
Thank you for taking the time to listen.
xxx
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