To Our Village,
Tonight, as I finally sit at 10:29pm, I want to take the time to reflect, thank and apologise.
I have always said that I was not the right person to give a child like Amelia to.
I WILL ALWAYS feel that way.
I am totally the wrong person.
I am EXTREMELY emotional, think too much, talk WAY too much and am too protective over those that I love..........that I do everything mentioned previously ON REPEAT.
Sometimes I feel like I have won tattslotto with what has happened in the last 9 years.
Mostly I don't.
It has all changed me for the better INTERNALLY...
But changed me for the worst EXTERNALLY.
I have been gifted a tolerant (many will high five that one!), caring, supportive and independent individual in his own right = HUSBAND.
I have been gifted a defiant, sport mad, intelligent, kind, BIG personality, thoughtful and argumentative = SON.
I have also been gifted a = DAUGHTER who speaks way beyond her years and expected thinking for someone born in 2003.
She teaches others what can never be taught in schools or books.
She makes others FEEL love that blindsides you.
She teaches you personal growth you never knew possible.
And then they are stuck with ME!
I am not looking for sympathy or positive comments, so don't bother.
I just want to thank OUR VILLAGE tonight.
Whether you dislike one or all of us, you are on this page for a reason.
Maybe it is gossip or curiosity.
Maybe it is genuine admiration and/or love.
(After 9 years since diagnosis, you recognise friendship, gossip-mongers and people offended easily more closely.
It is like a microscope with my emotions and level of thinking!).
As we complete 2019, I thank anyone that made Scott, Tommy or Amelia smile and feel genuine happiness.
Thank you for creating, continuing or trying to establish friendship, support and genuine love with any of them.
As always, we have had our struggles this year.......
BUT so has anyone and everyone.
It is what they call, LIFE.
Scott has a small network around him that he adores.
Tommy has one that is constantly dissolving and growing with his young age.
People that he can turn to at anytime.
Tommy has just returned home from one of his "other families", in another Australian state and the happiness and love is flowing off him.
I have considered their son one of my own since 2014.
I adore him.
I would not hesitate to have him living with us, I adore him that much!
And Amelia has had her carers, OR best friends as she prefers to call them.
They do their hours.
They spend time with her.
They establish "their connection and time with her".
Then they start to stay longer and then they message her frequently.
Then they have her stay overnight at their place free.........
Then they become family and I grow too close...........
I become protective and learn to love them too.
Professional relationship lost.
Scott has taught Amelia how to message through "voice command".
I have no idea what is going on with her messages anymore!
I do not know what messages she is sending!
Just like Tom!
Welcome to teenage hood.
We have amazing people come 4 times a week, into our home, to spend time with Amelia.
No matter what is occurring here or what mood any of us are in (predominately ME as I am the one here constantly).............
I am the only one that cannot lock myself away in a room away from our beautiful helpers...
I treat them too closely.
I know no other way, when they come into my home and act like they live here regularly.
They are people who genuinely love MY Amelia.
They become family.
THANK YOU to our amazing carers......
BUT now thank you to EVERYONE ON HERE.
Thank you to Amelia's Village.
OUR VILLAGE.
Tommy also has a massive one.
Thank you for your love support and hopefully personal growth through my writing.
Merry Christmas 2019.
xxx
Sunday 22 December 2019
Saturday 21 December 2019
A Perfect Life
Hello Fellow Inmates.
Just a quick post tonight due to the time and the fact I actually get a sleep in tomorrow!
This week, I realised that Amelia has been slowly teaching me the lesson of "Perfection".
Or "The Perfect Life".
Or "Expectations of life and others".
She has actually been teaching it to me this whole year.
Or maybe the last 16 years.
More explanation will come soon, as that sleep in is screaming at me to come to bed...........
But at 10:59pm tonight (no alcohol since June 24th, before you ask!) I realised what she meant.
"No one can be perfect. No one can ever be. We all get angry and make mistakes".
Hmmmmmmmmmmmmm
This week I have made massive mistakes with some people, been loyal to others, stood up for my values and been abused.
A mixture of positive and negative really ............
So just like some other recorded times on here.
My level of emotional intellect and knowledge changed when I learnt that my child was going to die.
We are now into our 10th year of supposed Palliative Care.
Best not to give me anymore extreme/major emotional baggage about people outside my immediate family, if you are not prepared to help or doing anything about it yourself.
That is Lesson Number 878.371.
As we end one child's first year of High School and I find myself questioning the importance of social stance and personality excellence compared to academic excellence.....
I am reminded of my own final day of Year 7..........
As the teacher announced it would be her final day at the school.......
I stood up and applauded in excitement....... ALONE.
My mum was called in for a meeting.
Does the apple really fall far from the tree with Tom and his supposed BIG personality?
He has done NOTHING like that!
LOL
(I unfortunately have many more stories about myself").
He has parents ringing me asking me if he is going to parties.
"If he isn't, my child isn't either".
He is repulsed already from cigarettes and alcohol because of me.
He and his father could stand up in a court of law and fight a battle for days, defending each others clients.
He hates drugs because of someone else close to him.
I think he is going to be fine.
Is anyone ever perfect?
Doesn't everyone make mistakes?
Or do some of us just stay honest instead of ignoring and withholding the truth?
Does it help us decide true friends that know and/or see it all?
Does it help us improve and/or change ourselves?
Or do we just accept who we are?
Constant analysis, observation, understanding and acceptance as we work our way through every individual we encounter in life, I think leads towards perfection.
But no one will ever receive the certificate.
It may lead you, but no one will ever reach it,
Even though many think they have........
(especially after alcohol or marijuana!).
Perfection for one will never be perfection for another.
If you walk into a room full of 100 people, would you genuinely like and get along in an everyday situation with every single person?
No.
So how can you expect 100 people to genuinely like and get along in an everyday situation with YOU?
A constant life rule forever maybe.
xxx
Just a quick post tonight due to the time and the fact I actually get a sleep in tomorrow!
This week, I realised that Amelia has been slowly teaching me the lesson of "Perfection".
Or "The Perfect Life".
Or "Expectations of life and others".
She has actually been teaching it to me this whole year.
Or maybe the last 16 years.
More explanation will come soon, as that sleep in is screaming at me to come to bed...........
But at 10:59pm tonight (no alcohol since June 24th, before you ask!) I realised what she meant.
"No one can be perfect. No one can ever be. We all get angry and make mistakes".
Hmmmmmmmmmmmmm
This week I have made massive mistakes with some people, been loyal to others, stood up for my values and been abused.
A mixture of positive and negative really ............
So just like some other recorded times on here.
My level of emotional intellect and knowledge changed when I learnt that my child was going to die.
We are now into our 10th year of supposed Palliative Care.
Best not to give me anymore extreme/major emotional baggage about people outside my immediate family, if you are not prepared to help or doing anything about it yourself.
That is Lesson Number 878.371.
As we end one child's first year of High School and I find myself questioning the importance of social stance and personality excellence compared to academic excellence.....
I am reminded of my own final day of Year 7..........
As the teacher announced it would be her final day at the school.......
I stood up and applauded in excitement....... ALONE.
My mum was called in for a meeting.
Does the apple really fall far from the tree with Tom and his supposed BIG personality?
He has done NOTHING like that!
LOL
(I unfortunately have many more stories about myself").
He has parents ringing me asking me if he is going to parties.
"If he isn't, my child isn't either".
He is repulsed already from cigarettes and alcohol because of me.
He and his father could stand up in a court of law and fight a battle for days, defending each others clients.
He hates drugs because of someone else close to him.
I think he is going to be fine.
Is anyone ever perfect?
Doesn't everyone make mistakes?
Or do some of us just stay honest instead of ignoring and withholding the truth?
Does it help us decide true friends that know and/or see it all?
Does it help us improve and/or change ourselves?
Or do we just accept who we are?
Constant analysis, observation, understanding and acceptance as we work our way through every individual we encounter in life, I think leads towards perfection.
But no one will ever receive the certificate.
It may lead you, but no one will ever reach it,
Even though many think they have........
(especially after alcohol or marijuana!).
Perfection for one will never be perfection for another.
If you walk into a room full of 100 people, would you genuinely like and get along in an everyday situation with every single person?
No.
So how can you expect 100 people to genuinely like and get along in an everyday situation with YOU?
A constant life rule forever maybe.
xxx
Saturday 14 December 2019
Struggling Post 113456
Hello anyone that still reads my crap!
This could be an incredibly confusing blog or one that could receive a nobel prize.
Lets go with the first thought.......
We will begin with Amelia's "Make a Wish".
Unfortunately I did what I always swear I would never do....
"Happy Facebook!".
The pressure to make "JUST ONE" wish is a lot on the actual person and family surrounding them.
As many of you know, Amelia decided to finally use her wish to meet Ed Sheeran.
That couldn't happen.....
And lots of potential wishes happened in between!
The final result was travelling to Sydney to see a television show that Amelia adores called "The Living Room" on Channel 10 being filmed.
Seemed easy enough!
As we arrived at the airport and unpacked all the bags, I asked where "Amelia's backpack" was.
My job was Amelia............ and Scott and Tom's was themselves and all bags into the car.
End Result?
No insulin, finger pricker or monitor for Amelia.
No Ipad.
No sunhat, sunglasses and sunscreen for Amelia.
The fury I was feeling was alleviated when the Qantas check in lady left her desk and insisted on leading us towards a fancy lounge WITH SMORGASBORD breakfast!
(Thank goodness for a second Type 1 Diabetic with insulin, monitor and needles!).
On the flight they stopped all entertainment (TV and music) to announce about "the very important person on board by the name of Amelia Nicholds".
Her squealing for the next 10 minutes showed the rest of the plane it was her.
When we landed, Scott and Tom chose to go and get our luggage while Amelia and I were treated like royalty in the cockpit with the pilots.
As we arrived to meet Scott, he said "Our taxi driver said no one is allowed to exit these doors, so we exit further along. We have spent the last 10 minutes watching people exit THOSE no exit doors".
We left through those doors.
The driver then proceeded to tell us about his views on the pathetic economy in our country and his NO CARE for the horrific bushfires nearby.
WELCOME TO SYDNEY!
Our hotel and the staff working there were phenomenal.
They treated us like royalty.
We only had Tuesday, Wednesday and Thursday to do everything.
Wednesday was totally "The Living Room".
So Tuesday I devoted to "Bondi Rescue" as Amelia and Tom love watching the TV show.
I was adamant to get them to Bondi Beach.
It was our only free day.
We arrived to "HIGH SMOG ALERT'.
"ASTHMATICS MUST STAY INDOORS".
Scott is asthmatic.
I can do it, I said.
I can get them to Bondi.
We were staying in Surrey Hills.
HILLS.
I repeat HILLS.
MANUAL WHEELCHAIR.
We get to the bus stop 1 km of HILLS away and wait for the correct bus.
(Thank you Tom for your new found biceps!)
We travel the 45 mins to Bondi Beach through curvy streets, with Tom and I standing next to Amelia.
I get car sick.
Something I suffer in extreme situations.
I begin leaning against my arm holding the handle above......
"Mum you WILL make it" Tom begins.
"Mum are you ok?" Amelia asks thinking that I am unconscious!
As we reach the other end both kids assist ME off the bus.
We sit and wait while I have my head between my knees with a vomit bag.
"Do not text your dad about this" I announce to Tom.
You heard all the good bits about Bondi on .....
Amelia's Project
but this story is about the other stuff.
We decided to eat lunch after I recovered, undercover near the lifeguard tower shown on TV.
I immediately apologised to both children that I would be delivering them back to their father STONED due to the man who knew EVERYTHING smoking joint after joint nearby.
"We will need more money for munchies tonight" I may have said.
We got Uber Eats that night and it was soggy and crap!
(The kid ate a normal amount).
The next day was "The Wish".
We ate breakfast 2 doors away and then returned for "make up" and "hair".
A beautiful person that had donated her time for Amelia.
AMAZING person actually.
She had travelled 1 hour just for Amelia.
We arrived at The Living Room and were introduced to the stars quickly.
They were awesome.
Friendly, welcoming and inclusive.
Then they disappeared for filming.......
Understandably!!!!!
For the next 4 hours we looked at the back of Salvation Army Volunteers as they "pretended" to pack hampers for families.
We COULD NOT SEE the stage or hosts.
We could barely hear the talking.
4 hours of Amelia's actual wish with Scott and I joking around to relax and ease the issue.
So...........
On December 20th, we will be watching the show with you!
BUT Amanda Keller came up to me at the end and said "You have no idea how honoured we all are that SHE chose us. Please come back after March for a normal filming".
Amelia chose the Christmas Special as her wish because everyone leaves with presents (like an Ellen or Oprah show).
That did not happen.
The first time in her 8 years of watching that it did not happen.
That night, we bought 2 minute noodles for dinner at the convenience store up the hill, as everywhere else had steps or was fully booked (we walked for 90 minutes first).
The day after, we were meant to have a special tour of Taronga Zoo, but due to the continued smog, I explained that I could not do the hill of Taronga Zoo without Scott.
We went to the indoor Aquarium instead.
A beautiful Dugong was stuck in a 3 x 3 container looking incredibly depressed.
I filed a complaint.
We were lucky to finish with dinner and a ferry ride from Darling Harbour to Circular Quay.
My positive overall was "SEEING TOM" again.
My Tom.
The one who talks and makes eye contact.
Year 7 has brought a major change that is hard to live with.
As we left with all of the positivity I had GONE, the Qantas check in lady JUST CHECKED US IN.
Scott, Tom and Amelia walked away to find "Gate 20".
I may have stayed behind asking.......
"But aren't we meant to go to the lounge?!
The one with the smorgasbord?!"
"No Lounge obviously today Amanda. Just walk" Scott said.
Did I mention that Miss Lana passed away in Texas yesterday?
She had A-T and was Amelia's age.
She was amazing and Amelia's twin.
I am struggling to cope with this one.
There have been about 11 amazing and beautiful children Amelia's age now, since she was diagnosed.
xxx
This could be an incredibly confusing blog or one that could receive a nobel prize.
Lets go with the first thought.......
We will begin with Amelia's "Make a Wish".
Unfortunately I did what I always swear I would never do....
"Happy Facebook!".
The pressure to make "JUST ONE" wish is a lot on the actual person and family surrounding them.
As many of you know, Amelia decided to finally use her wish to meet Ed Sheeran.
That couldn't happen.....
And lots of potential wishes happened in between!
The final result was travelling to Sydney to see a television show that Amelia adores called "The Living Room" on Channel 10 being filmed.
Seemed easy enough!
As we arrived at the airport and unpacked all the bags, I asked where "Amelia's backpack" was.
My job was Amelia............ and Scott and Tom's was themselves and all bags into the car.
End Result?
No insulin, finger pricker or monitor for Amelia.
No Ipad.
No sunhat, sunglasses and sunscreen for Amelia.
The fury I was feeling was alleviated when the Qantas check in lady left her desk and insisted on leading us towards a fancy lounge WITH SMORGASBORD breakfast!
(Thank goodness for a second Type 1 Diabetic with insulin, monitor and needles!).
On the flight they stopped all entertainment (TV and music) to announce about "the very important person on board by the name of Amelia Nicholds".
Her squealing for the next 10 minutes showed the rest of the plane it was her.
When we landed, Scott and Tom chose to go and get our luggage while Amelia and I were treated like royalty in the cockpit with the pilots.
As we arrived to meet Scott, he said "Our taxi driver said no one is allowed to exit these doors, so we exit further along. We have spent the last 10 minutes watching people exit THOSE no exit doors".
We left through those doors.
The driver then proceeded to tell us about his views on the pathetic economy in our country and his NO CARE for the horrific bushfires nearby.
WELCOME TO SYDNEY!
Our hotel and the staff working there were phenomenal.
They treated us like royalty.
We only had Tuesday, Wednesday and Thursday to do everything.
Wednesday was totally "The Living Room".
So Tuesday I devoted to "Bondi Rescue" as Amelia and Tom love watching the TV show.
I was adamant to get them to Bondi Beach.
It was our only free day.
We arrived to "HIGH SMOG ALERT'.
"ASTHMATICS MUST STAY INDOORS".
Scott is asthmatic.
I can do it, I said.
I can get them to Bondi.
We were staying in Surrey Hills.
HILLS.
I repeat HILLS.
MANUAL WHEELCHAIR.
We get to the bus stop 1 km of HILLS away and wait for the correct bus.
(Thank you Tom for your new found biceps!)
We travel the 45 mins to Bondi Beach through curvy streets, with Tom and I standing next to Amelia.
I get car sick.
Something I suffer in extreme situations.
I begin leaning against my arm holding the handle above......
"Mum you WILL make it" Tom begins.
"Mum are you ok?" Amelia asks thinking that I am unconscious!
As we reach the other end both kids assist ME off the bus.
We sit and wait while I have my head between my knees with a vomit bag.
"Do not text your dad about this" I announce to Tom.
You heard all the good bits about Bondi on .....
Amelia's Project
but this story is about the other stuff.
We decided to eat lunch after I recovered, undercover near the lifeguard tower shown on TV.
I immediately apologised to both children that I would be delivering them back to their father STONED due to the man who knew EVERYTHING smoking joint after joint nearby.
"We will need more money for munchies tonight" I may have said.
We got Uber Eats that night and it was soggy and crap!
(The kid ate a normal amount).
The next day was "The Wish".
We ate breakfast 2 doors away and then returned for "make up" and "hair".
A beautiful person that had donated her time for Amelia.
AMAZING person actually.
She had travelled 1 hour just for Amelia.
We arrived at The Living Room and were introduced to the stars quickly.
They were awesome.
Friendly, welcoming and inclusive.
Then they disappeared for filming.......
Understandably!!!!!
For the next 4 hours we looked at the back of Salvation Army Volunteers as they "pretended" to pack hampers for families.
We COULD NOT SEE the stage or hosts.
We could barely hear the talking.
4 hours of Amelia's actual wish with Scott and I joking around to relax and ease the issue.
So...........
On December 20th, we will be watching the show with you!
BUT Amanda Keller came up to me at the end and said "You have no idea how honoured we all are that SHE chose us. Please come back after March for a normal filming".
Amelia chose the Christmas Special as her wish because everyone leaves with presents (like an Ellen or Oprah show).
That did not happen.
The first time in her 8 years of watching that it did not happen.
That night, we bought 2 minute noodles for dinner at the convenience store up the hill, as everywhere else had steps or was fully booked (we walked for 90 minutes first).
The day after, we were meant to have a special tour of Taronga Zoo, but due to the continued smog, I explained that I could not do the hill of Taronga Zoo without Scott.
We went to the indoor Aquarium instead.
A beautiful Dugong was stuck in a 3 x 3 container looking incredibly depressed.
I filed a complaint.
We were lucky to finish with dinner and a ferry ride from Darling Harbour to Circular Quay.
My positive overall was "SEEING TOM" again.
My Tom.
The one who talks and makes eye contact.
Year 7 has brought a major change that is hard to live with.
As we left with all of the positivity I had GONE, the Qantas check in lady JUST CHECKED US IN.
Scott, Tom and Amelia walked away to find "Gate 20".
I may have stayed behind asking.......
"But aren't we meant to go to the lounge?!
The one with the smorgasbord?!"
"No Lounge obviously today Amanda. Just walk" Scott said.
Did I mention that Miss Lana passed away in Texas yesterday?
She had A-T and was Amelia's age.
She was amazing and Amelia's twin.
I am struggling to cope with this one.
There have been about 11 amazing and beautiful children Amelia's age now, since she was diagnosed.
xxx
Thursday 5 December 2019
Changing Lives Part 2
Hello Gorgeous People,
Recently I received a letter in the mail from a therapist that worked with Amelia from before her Ataxia Telangiectasia diagnosis (2010) till about 3 years after.
She put in applications for equipment and home modifications in such a subtle, gentle way that the future of Amelia's diagnosis was still able to not be fully absorbed by me.
All I was able to remember from the day of diagnosis was "go home and cherish her".
I was not thinking of the inbetween.
The decline.
The ramps that would be needed when she became wheelchair bound.
The shower chair when she could no longer stand in the shower.
The kitchen table chair to stop her from choking when she could no longer swallow properly.
She was still walking, talking, dancing and ALIVE.
The room full of doctors just told me she was going to die soon.
This person set up our house so that we had everything we needed for what was to come.
She became a friend and a supporter through the transition of "normal" child to "exceptional" child.
This letter said many things, but ended with........
* congratulations on the many successes that you are achieving - individually, as a family and for the wider community.
* thank you for helping me to "keep real". To stay motivated for the therapy students I now teach and ultimately for the people they will work with.
As a person older and wiser than me, I always admired this person and have taken great comfort and am immensely flattered in her words.
_______________________________________________________
After my most recent blog, a friend said to me "I do not know that kind of world".
BUT everything with everyone is relative.
Pain and sadness is equal, despite the massive differences in circumstance.
If you have never felt the kind of pain, sadness, stress and hurt you are experiencing, then it is relative to people that live a life like mine.
Witnessing your child go through their first heartbreak is relative.
Because the tears and the struggle to breathe are equal.
"I am so sorry. What I am experiencing is nothing compared to you" is said to me on a daily basis.
But it does compare, because it is relative to your life.
_________________________________________________________
Tonight I received a message that I have been given permission to share......
I just logged into Facebook and read your post from 3/12/19 in regards to dear Toby and Amelia.
I am facing some of the most challenging issues in my little world at the moment and I am so emotionally fucked and mentally drained, to the extent of finding myself sitting at the top of Olivers Hill with a box of pills recently.
Then I read one of the most powerful, raw and heartbreaking blogs.
I am now in tears as I am reminded of how fucked up this world is and so overwhelmed by the impact that your strength and Amelia's attitude has had on me.
For what it is worth, thank you for sharing your personal journey and please know that you have helped me in a way that I cannot explain.
I feel so selfish and my pain is a drop in the ocean compared to yours and Toby's mum.
But I need you to know that I am always here for you and I am so proud of Amelia's strength and resilience.
You and Scott are an amazing team and should be so very proud of yourselves.
Amelia is a kind, caring, thoughtful, intelligent and beautiful, inside and out, young woman because of her mum and dad.
You truly have had a huge impact on me.
_________________________________________________________
Many, many people read the last blog and it was shared multiple times, to hopefully reach people like this and in a horrible moment like this.
Hopefully people are remembering in bad situations to dig to the very pit of their stomach and to the very far most point of their brain to find a positive.
_________________________________________________________
Amelia is one of many that has been placed in this Universe for a reason.
To change peoples lives for the better.
My purpose in life has become the one to communicate what Amelia teaches me and what I learn from living this life through my own eyes to all of you.
_________________________________________________________
Today, another 10 year old boy passed away from Amelia's school.
Cardiac Arrest.
R.I.P Shiraz
xxx
Recently I received a letter in the mail from a therapist that worked with Amelia from before her Ataxia Telangiectasia diagnosis (2010) till about 3 years after.
She put in applications for equipment and home modifications in such a subtle, gentle way that the future of Amelia's diagnosis was still able to not be fully absorbed by me.
All I was able to remember from the day of diagnosis was "go home and cherish her".
I was not thinking of the inbetween.
The decline.
The ramps that would be needed when she became wheelchair bound.
The shower chair when she could no longer stand in the shower.
The kitchen table chair to stop her from choking when she could no longer swallow properly.
She was still walking, talking, dancing and ALIVE.
The room full of doctors just told me she was going to die soon.
This person set up our house so that we had everything we needed for what was to come.
She became a friend and a supporter through the transition of "normal" child to "exceptional" child.
This letter said many things, but ended with........
* congratulations on the many successes that you are achieving - individually, as a family and for the wider community.
* thank you for helping me to "keep real". To stay motivated for the therapy students I now teach and ultimately for the people they will work with.
As a person older and wiser than me, I always admired this person and have taken great comfort and am immensely flattered in her words.
_______________________________________________________
After my most recent blog, a friend said to me "I do not know that kind of world".
BUT everything with everyone is relative.
Pain and sadness is equal, despite the massive differences in circumstance.
If you have never felt the kind of pain, sadness, stress and hurt you are experiencing, then it is relative to people that live a life like mine.
Witnessing your child go through their first heartbreak is relative.
Because the tears and the struggle to breathe are equal.
"I am so sorry. What I am experiencing is nothing compared to you" is said to me on a daily basis.
But it does compare, because it is relative to your life.
_________________________________________________________
Tonight I received a message that I have been given permission to share......
I just logged into Facebook and read your post from 3/12/19 in regards to dear Toby and Amelia.
I am facing some of the most challenging issues in my little world at the moment and I am so emotionally fucked and mentally drained, to the extent of finding myself sitting at the top of Olivers Hill with a box of pills recently.
Then I read one of the most powerful, raw and heartbreaking blogs.
I am now in tears as I am reminded of how fucked up this world is and so overwhelmed by the impact that your strength and Amelia's attitude has had on me.
For what it is worth, thank you for sharing your personal journey and please know that you have helped me in a way that I cannot explain.
I feel so selfish and my pain is a drop in the ocean compared to yours and Toby's mum.
But I need you to know that I am always here for you and I am so proud of Amelia's strength and resilience.
You and Scott are an amazing team and should be so very proud of yourselves.
Amelia is a kind, caring, thoughtful, intelligent and beautiful, inside and out, young woman because of her mum and dad.
You truly have had a huge impact on me.
_________________________________________________________
Many, many people read the last blog and it was shared multiple times, to hopefully reach people like this and in a horrible moment like this.
Hopefully people are remembering in bad situations to dig to the very pit of their stomach and to the very far most point of their brain to find a positive.
_________________________________________________________
Amelia is one of many that has been placed in this Universe for a reason.
To change peoples lives for the better.
My purpose in life has become the one to communicate what Amelia teaches me and what I learn from living this life through my own eyes to all of you.
_________________________________________________________
Today, another 10 year old boy passed away from Amelia's school.
Cardiac Arrest.
R.I.P Shiraz
xxx
Tuesday 3 December 2019
Changing a Life
Hello Friends,
Recently Amelia went through a sad and negative stage.
A stage where she became "fed up" with her life after receiving ANOTHER diagnosis to add to the list.
"I am having bad thoughts" were her exact words one night.
In her individual way, she was semi-suicidal and wondering if the future was really worth it.
We sat down with her and talked.
We organised time for her to speak to many around her that she adores about what changes could be made to help her appreciate and enjoy life as much as humanly possible again.
We talked about the all negatives and how to deal with them in the best way possible.
We let her be sad.
We let her cry.
We let her be angry.
We convinced her that it was finally time for her to seek professional help for her Mental Health.
When people asked her how she was going, she would say "I am dealing with my Mental Health right now thank you!"
LOL
I am happy to report that the "bad thoughts" have passed with the help of carers, friends, working with Horses, Kangaroo Joeys, making scrunchies and medical staff.
The earliest Appointment I could get with a psychologist was late January.........
So till then we wait for more help.
_______________________________________________________________.
One of the negatives we spoke of, was the sudden decline of one of her friends at school.
Amelia mentioned it was hard to watch her no longer walking, eating and struggling to speak.
We reminded Amelia that this is how everyone felt when similar things happened to her 9 years ago.
________________________________________________________________
Last week Amelia's school announced the passing of another student.
A mother that had to make the decision "to turn off the machine" by herself as her husband had already passed away.
Being the parent of a special needs child is a world that you struggle to live in.
I am feeling all the emotions for that mother.
Knowing one day that will be me.
As I dropped Amelia to school today , I saw staff wiping their eyes and wearing clothes perfect for a funeral.
"He was just so happy and he was just a beautiful boy" a staff member said.
He was 10 years old.
I walked to the car and cried my eyes out.
_________________________________________________________________
This past weekend Amelia spoke again about the decline of her friend.
How the child was sad and angry in class.
I chose to sit down and speak honestly to her about "that friend".
"Amelia I have to talk to you about your friend.
The doctors have said that they may not have long"
Amelia silently stared at me and just said "oh".
"I need you to REALLY be their friend right now" I said.
"How?" Amelia asked.
"Say hello to them,
smile at them,
put your hand on theirs when they are sad.
I want you to be the happiness they look forward to when they come to school.
I want you to make what time is left AMAZING" I tried to offer.
"How do I do that?" Amelia asked.
"In any bad situation in life you dig to the very pit of your stomach and to the very far most point of your brain to find a positive.
Think of your own plans and life right now and how they can join in your daily life in the coming weeks.
Have fun outside of school as well as inside!
Ask them to join you in your next hair colour change. We will do theirs too!
"But they are still so young. They cant die." she stated (not remembering her own fate).
"You can live to 90 years old and have hated your entire life", I began.
"Family, friends, work, housing, clothing and food have always been depressing and a battle.
You can live to 18 and have been surrounded by so much love, happiness, friendship and laughter that this 18 years are something the 90 year old will never experience.
A life worth living and full of goodness.
Who lived the better life?
We can all change people lives with a smile, a message, a laugh, an invitation for fun and some effort to improve someones else's situation by helping them create an amazing life.
Rather than just thinking and doing something for just ourselves, it is a win/win doing something small for someone else.
We feel as good as they do" I explained.
Amelia came home yesterday and said I made sure we had fun today and we laughed lots.
I loved it.
________________________________________________________________
As I drove away from Amelia's school this morning with tissues wiping my eyes thinking of a 10 year old's funeral, I reached to the pit of my stomach and the far most point of my brain to find my positive for the day..........
This is what I found.........
As we were driving to school , twenty minutes earlier, Amelia suddenly squealed and yelled "Ha HA!!!!!" as she realised something.
"I CAN CHANGE PEOPLE'S LIVES!!!!!!!!!"
Yes.
Yes you can.
I first learnt it 9 years ago.......
With yours.
But Miss Amelia if only you knew of the hundreds of lives YOU have already changed for the better.
Mostly mine.
R.I.P Toby.
May you fly high and beyond.
xxx
Recently Amelia went through a sad and negative stage.
A stage where she became "fed up" with her life after receiving ANOTHER diagnosis to add to the list.
"I am having bad thoughts" were her exact words one night.
In her individual way, she was semi-suicidal and wondering if the future was really worth it.
We sat down with her and talked.
We organised time for her to speak to many around her that she adores about what changes could be made to help her appreciate and enjoy life as much as humanly possible again.
We talked about the all negatives and how to deal with them in the best way possible.
We let her be sad.
We let her cry.
We let her be angry.
We convinced her that it was finally time for her to seek professional help for her Mental Health.
When people asked her how she was going, she would say "I am dealing with my Mental Health right now thank you!"
LOL
I am happy to report that the "bad thoughts" have passed with the help of carers, friends, working with Horses, Kangaroo Joeys, making scrunchies and medical staff.
The earliest Appointment I could get with a psychologist was late January.........
So till then we wait for more help.
_______________________________________________________________.
One of the negatives we spoke of, was the sudden decline of one of her friends at school.
Amelia mentioned it was hard to watch her no longer walking, eating and struggling to speak.
We reminded Amelia that this is how everyone felt when similar things happened to her 9 years ago.
________________________________________________________________
Last week Amelia's school announced the passing of another student.
A mother that had to make the decision "to turn off the machine" by herself as her husband had already passed away.
Being the parent of a special needs child is a world that you struggle to live in.
I am feeling all the emotions for that mother.
Knowing one day that will be me.
As I dropped Amelia to school today , I saw staff wiping their eyes and wearing clothes perfect for a funeral.
"He was just so happy and he was just a beautiful boy" a staff member said.
He was 10 years old.
I walked to the car and cried my eyes out.
_________________________________________________________________
This past weekend Amelia spoke again about the decline of her friend.
How the child was sad and angry in class.
I chose to sit down and speak honestly to her about "that friend".
"Amelia I have to talk to you about your friend.
The doctors have said that they may not have long"
Amelia silently stared at me and just said "oh".
"I need you to REALLY be their friend right now" I said.
"How?" Amelia asked.
"Say hello to them,
smile at them,
put your hand on theirs when they are sad.
I want you to be the happiness they look forward to when they come to school.
I want you to make what time is left AMAZING" I tried to offer.
"How do I do that?" Amelia asked.
"In any bad situation in life you dig to the very pit of your stomach and to the very far most point of your brain to find a positive.
Think of your own plans and life right now and how they can join in your daily life in the coming weeks.
Have fun outside of school as well as inside!
Ask them to join you in your next hair colour change. We will do theirs too!
"But they are still so young. They cant die." she stated (not remembering her own fate).
"You can live to 90 years old and have hated your entire life", I began.
"Family, friends, work, housing, clothing and food have always been depressing and a battle.
You can live to 18 and have been surrounded by so much love, happiness, friendship and laughter that this 18 years are something the 90 year old will never experience.
A life worth living and full of goodness.
Who lived the better life?
We can all change people lives with a smile, a message, a laugh, an invitation for fun and some effort to improve someones else's situation by helping them create an amazing life.
Rather than just thinking and doing something for just ourselves, it is a win/win doing something small for someone else.
We feel as good as they do" I explained.
Amelia came home yesterday and said I made sure we had fun today and we laughed lots.
I loved it.
________________________________________________________________
As I drove away from Amelia's school this morning with tissues wiping my eyes thinking of a 10 year old's funeral, I reached to the pit of my stomach and the far most point of my brain to find my positive for the day..........
This is what I found.........
As we were driving to school , twenty minutes earlier, Amelia suddenly squealed and yelled "Ha HA!!!!!" as she realised something.
"I CAN CHANGE PEOPLE'S LIVES!!!!!!!!!"
Yes.
Yes you can.
I first learnt it 9 years ago.......
With yours.
But Miss Amelia if only you knew of the hundreds of lives YOU have already changed for the better.
Mostly mine.
R.I.P Toby.
May you fly high and beyond.
xxx
Saturday 9 November 2019
A New Era
Hello Friends,
We seem to have entered a new era and stage of our lives in this house.
As I feel the weight of achieving greatness for Amelia, in what is unusual circumstances, is now lifted, I feel relief.
Amelia has entered a new stage of her life where carers, who have become her best friends, come and go.
They all bring their own personalities and skills to share with her and she excitedly awaits their arrival.
The squeals upon seeing their car/s arriving are deafening!
We have 4 permanent girls and 2 casual girls AND 1 boy.
They message each other on social media and "tag" her subjects they know she will love or be interested in.
Amelia is now behaving like a young lady with strong opinions, independence and does not hesitate to request her needs or wants.
A distance has been created been her and myself that is healthy and neither Amelia or I feel pressure to defend, protect and care solely for each other anymore.
Scott and Tom had already created that distance through work and school.
Amelia has grown up.
She has 2 jobs where she is helping to care for disadvantaged and unwell animals.
She likes feeling needed and wanted.
After a long stage of acceptance and observation, I have learnt to adapt to this new era and begin a process of personal growth myself.
Create a life just for myself again.
I spend everyday helping others, while still trying to create a routine of running my own house.
When my weight recently reached 98kg's, I decided that I would move my main focus to myself in a small way and create an eating and exercise plan that would help me feel better about myself.
I began by completely stopping drinking alcohol.
That helped me to lose some of my depression, anxiety and tiredness.
It is now 2 years since Scott and I stopped smoking, so the elimination of "bad habits" was going well.
Next came the bad food.
My days had become 3 Mocha's (chocolate coffee) during the day, dip and biscuits for afternoon tea, dinner, wine and maltesers for supper.
No wonder I was so tired and 98 kg!
Now I have a vitamin shake (with a spoonful of plain coffee!) for breakfast, a vitamin soup for lunch, a handful of peanuts for afternoon tea and dinner.
I make sure that I also have at least 2 litres of water a day.
The "binge" chocolate at night is my battle!!!
I walk the dog every morning and my day is quite physical when helping others.
But I have lost 14kg so far and am proud of myself.
With Tom, starting High School, we have introduced dinner at the table again.
Then we get to at least see and speak to him at least once during the day.
It is very different no longer knowing, children, parents and teachers.
To rely on a child of 13 to communicate his school and social life is hard when you have always had strong knowledge.
I was disappointed to hear that a child has found the photo of Tom in a pink dress on my facebook page and it is now being circulated around various year levels and schools.
Apparently the teasing is constant.
When I questioned whether he explained that he did it for his sister?
That we were worried she may die?
That she is already a very sick child?
He said "they don't care. It is a photo of me wearing a pink dress".
Welcome to the new world of social media in the teenage years Amanda.
So now I must leave to continue another "quest" I have taken on.
Sorting through 30,000+ photos and putting them into folders and deleting many.
So far, I have spent about 50 hours on it!
At the end of the month, we embark on Amelia's Make a Wish holiday.
We are going to Sydney to witness a taping of The Living Room, Channel 10 on a Friday night for those in Australia, and to meet the hosts.
But not just any episode........
Amelia specifically requested "The Christmas Special, because everyone in the audience goes home with presents!".
Clever child.
Hope you are all well.
xxx
We seem to have entered a new era and stage of our lives in this house.
As I feel the weight of achieving greatness for Amelia, in what is unusual circumstances, is now lifted, I feel relief.
Amelia has entered a new stage of her life where carers, who have become her best friends, come and go.
They all bring their own personalities and skills to share with her and she excitedly awaits their arrival.
The squeals upon seeing their car/s arriving are deafening!
We have 4 permanent girls and 2 casual girls AND 1 boy.
They message each other on social media and "tag" her subjects they know she will love or be interested in.
Amelia is now behaving like a young lady with strong opinions, independence and does not hesitate to request her needs or wants.
A distance has been created been her and myself that is healthy and neither Amelia or I feel pressure to defend, protect and care solely for each other anymore.
Scott and Tom had already created that distance through work and school.
Amelia has grown up.
She has 2 jobs where she is helping to care for disadvantaged and unwell animals.
She likes feeling needed and wanted.
After a long stage of acceptance and observation, I have learnt to adapt to this new era and begin a process of personal growth myself.
Create a life just for myself again.
I spend everyday helping others, while still trying to create a routine of running my own house.
When my weight recently reached 98kg's, I decided that I would move my main focus to myself in a small way and create an eating and exercise plan that would help me feel better about myself.
I began by completely stopping drinking alcohol.
That helped me to lose some of my depression, anxiety and tiredness.
It is now 2 years since Scott and I stopped smoking, so the elimination of "bad habits" was going well.
Next came the bad food.
My days had become 3 Mocha's (chocolate coffee) during the day, dip and biscuits for afternoon tea, dinner, wine and maltesers for supper.
No wonder I was so tired and 98 kg!
Now I have a vitamin shake (with a spoonful of plain coffee!) for breakfast, a vitamin soup for lunch, a handful of peanuts for afternoon tea and dinner.
I make sure that I also have at least 2 litres of water a day.
The "binge" chocolate at night is my battle!!!
I walk the dog every morning and my day is quite physical when helping others.
But I have lost 14kg so far and am proud of myself.
With Tom, starting High School, we have introduced dinner at the table again.
Then we get to at least see and speak to him at least once during the day.
It is very different no longer knowing, children, parents and teachers.
To rely on a child of 13 to communicate his school and social life is hard when you have always had strong knowledge.
I was disappointed to hear that a child has found the photo of Tom in a pink dress on my facebook page and it is now being circulated around various year levels and schools.
Apparently the teasing is constant.
When I questioned whether he explained that he did it for his sister?
That we were worried she may die?
That she is already a very sick child?
He said "they don't care. It is a photo of me wearing a pink dress".
Welcome to the new world of social media in the teenage years Amanda.
So now I must leave to continue another "quest" I have taken on.
Sorting through 30,000+ photos and putting them into folders and deleting many.
So far, I have spent about 50 hours on it!
At the end of the month, we embark on Amelia's Make a Wish holiday.
We are going to Sydney to witness a taping of The Living Room, Channel 10 on a Friday night for those in Australia, and to meet the hosts.
But not just any episode........
Amelia specifically requested "The Christmas Special, because everyone in the audience goes home with presents!".
Clever child.
Hope you are all well.
xxx
Friday 20 September 2019
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
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
Saturday 7 September 2019
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
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
Saturday 27 July 2019
Goodbye and Thank you to Amelia's Teacher
Dear Friends far and wide,
We are so very lucky in so many ways for the "life" Amelia has introduced us to.
It has not only changed the people we were, but has also reminded us when we make the wrong decision or head down a negative pathway, (which happens regularly!).
Amelia has taught us the way we do not want to be and the people that are not compatible to our way of living and thinking anymore.
The support our family receives from family, friends, neighbours, school staff, sporting teams, online and Medical Professionals is phenomenal.
This week we had to say goodbye to Amelia's school teacher as she embarks on a journey to live with "her love" in Europe.
Another uniquely beautiful person that Amelia fell in love with.
Someone we would never have had the pleasure of meeting if we did not have Amelia.
I would like to share my goodbye letter to her, because it applies to so many of you in our life.
It was given with a box full of carefully chosen gifts...........
To Our Dearest ____________,
Everything chosen in this box is a memory and reminder of Amelia Grace Nicholds.
Someone who likes to dream, imagine, believe in magic and look at everything with happiness and hope.
There is also a reminder to you that you are someone special.
Most of the children you have taught, nurtured and treated "as normal" have a scientifically proven limited lifetime.
They will not experience what the majority do in their adult years.
But through their courage, bravery, positivity and genuine love, they get to meet people like you.
Us parents regularly struggle with the thought of the future and may not make the best decisions, but we know there are people like you to pick up the pieces and keep the circle of love and support tight around our kids.
My mantra since Amelia's diagnosis has been "to create the most amazing life for her that I possibly can" AND "No Regrets at the End".
Thank YOU for your massive contribution to Amelia's amazing life.
Love
Amanda, Scott, Amelia and Tommy.
These words apply to so many in our life xxx
Hope everyone is well.
We are so very lucky in so many ways for the "life" Amelia has introduced us to.
It has not only changed the people we were, but has also reminded us when we make the wrong decision or head down a negative pathway, (which happens regularly!).
Amelia has taught us the way we do not want to be and the people that are not compatible to our way of living and thinking anymore.
The support our family receives from family, friends, neighbours, school staff, sporting teams, online and Medical Professionals is phenomenal.
This week we had to say goodbye to Amelia's school teacher as she embarks on a journey to live with "her love" in Europe.
Another uniquely beautiful person that Amelia fell in love with.
Someone we would never have had the pleasure of meeting if we did not have Amelia.
I would like to share my goodbye letter to her, because it applies to so many of you in our life.
It was given with a box full of carefully chosen gifts...........
To Our Dearest ____________,
Everything chosen in this box is a memory and reminder of Amelia Grace Nicholds.
Someone who likes to dream, imagine, believe in magic and look at everything with happiness and hope.
There is also a reminder to you that you are someone special.
Most of the children you have taught, nurtured and treated "as normal" have a scientifically proven limited lifetime.
They will not experience what the majority do in their adult years.
But through their courage, bravery, positivity and genuine love, they get to meet people like you.
Us parents regularly struggle with the thought of the future and may not make the best decisions, but we know there are people like you to pick up the pieces and keep the circle of love and support tight around our kids.
My mantra since Amelia's diagnosis has been "to create the most amazing life for her that I possibly can" AND "No Regrets at the End".
Thank YOU for your massive contribution to Amelia's amazing life.
Love
Amanda, Scott, Amelia and Tommy.
These words apply to so many in our life xxx
Hope everyone is well.
Friday 14 June 2019
Hello 14/6/2019
Hi
I am sad, tired and confused.
So called Palliative care for 9 indefinite years is hard.
Mourning and grieving and supporting those around you is hard.
How long to go?
How many years to go?
When Amelia seems alive and perfectly fine......... at the moment.
Absorbing all the happiness and memories is amazing and difficult.
Being "the rock" alongside Scott is hard.
We seem to be supporting everyone else as we support Amelia in everyday life 24/7.
I am so tired, but never want this to end.
Help me stay sane........ Please.
xxx
I am sad, tired and confused.
So called Palliative care for 9 indefinite years is hard.
Mourning and grieving and supporting those around you is hard.
How long to go?
How many years to go?
When Amelia seems alive and perfectly fine......... at the moment.
Absorbing all the happiness and memories is amazing and difficult.
Being "the rock" alongside Scott is hard.
We seem to be supporting everyone else as we support Amelia in everyday life 24/7.
I am so tired, but never want this to end.
Help me stay sane........ Please.
xxx
Wednesday 27 March 2019
March 27th 1999
Hello beautiful people,
Today is Scott and my 20th wedding anniversary.
3 days ago it was the "29 years together, anniversary".
The photo's you will see below, were when we lived an immensely carefree and happy life....
A very fulfilling and prosperous life......
Scott and my joyful, stressless life is evident in the photo's.
A lot has changed since then.
2 children came to ground us and remind us of the importance in giving and acceptance.
The reminder that friends and family will help you keep your head above the water line.
A reminder that money and employment accolades are nothing compared to you being told
"give HER an amazing life".
To sit back and realise
"HE needs one too".
Scott and I met when he and I were 15 years old.
"Why have you not called me yet?" I demanded after our first kiss 2 weeks earlier!
The beginning memories of him are always with his 2 best friends.
I am grateful that we are still in touch with Danny and Ben.
I will always have a connection with them, no matter what.
I met my soul mate in 1990.
I was 15 years old.
We have had many ups and downs.
Sooooo many.
Mainly due to stress over the kids diagnosis's.
I do not know if I have had much time to treat him like a king, or for him to treat me like a queen.
But we know respect, love and acceptance of each other.
We know a pledge of understanding, acceptance and appreciation in difficult times.
We are doing the best we can in a difficult situation.
Laughing still happens often.
Below is the photo expressions of a man that made me laugh immediately.
The moment I met him.
Scott is my partner in life.
Many years after we met it was fate and for a purpose.
We have had many years of "medical partnership" for the kids through diagnosis.
Love you all immensely.
(And yes! one of Amelia's carers is forcing us to go out for lunch, on our own, on Saturday!)
xxxx
Today is Scott and my 20th wedding anniversary.
3 days ago it was the "29 years together, anniversary".
The photo's you will see below, were when we lived an immensely carefree and happy life....
A very fulfilling and prosperous life......
Scott and my joyful, stressless life is evident in the photo's.
A lot has changed since then.
2 children came to ground us and remind us of the importance in giving and acceptance.
The reminder that friends and family will help you keep your head above the water line.
A reminder that money and employment accolades are nothing compared to you being told
"give HER an amazing life".
To sit back and realise
"HE needs one too".
Scott and I met when he and I were 15 years old.
"Why have you not called me yet?" I demanded after our first kiss 2 weeks earlier!
The beginning memories of him are always with his 2 best friends.
I am grateful that we are still in touch with Danny and Ben.
I will always have a connection with them, no matter what.
I met my soul mate in 1990.
I was 15 years old.
We have had many ups and downs.
Sooooo many.
Mainly due to stress over the kids diagnosis's.
I do not know if I have had much time to treat him like a king, or for him to treat me like a queen.
But we know respect, love and acceptance of each other.
We know a pledge of understanding, acceptance and appreciation in difficult times.
We are doing the best we can in a difficult situation.
Laughing still happens often.
Below is the photo expressions of a man that made me laugh immediately.
The moment I met him.
Scott is my partner in life.
Many years after we met it was fate and for a purpose.
We have had many years of "medical partnership" for the kids through diagnosis.
Love you all immensely.
(And yes! one of Amelia's carers is forcing us to go out for lunch, on our own, on Saturday!)
xxxx
xxx
Thursday 7 March 2019
Hello awesome people,
I originally learnt that I could write my feelings in December 2010.
It was a very new discovery and blew everyone close to me away.
"You can write!" they said.
I would write at 1pm or 1am, because my daughter had just been diagnosed with a terminal illness.
TERMINAL.
I needed to empty my mind of the pain and hurt.
I had just been told that my 7 year old child was going to die at anytime and there was no cure.
Writing helped me sleep, talk and LIVE.
"No regrets at the end" became my motto, and "An amazing life".
I am proud of accomplishing this so far and looking at my amazing family, I feel overwhelming happiness and an overwhelming sense of achievement.
I fuck up regularly and Tom has occasional moments......
But I have made many mistakes and lost many friends.
I have also seen other peoples true colours and enjoyed their departure from our lives.
The silent support has seen Scott in keeping me going and grounded.
I am loud and he is quiet.
BUT......... I need to also write when everything is going well!
I forget about that.
Everyone here is always so supportive and has followed us from the beginning.
I write about bad and sad things.
I write about celebrity meetings.
I write about thanking, congratulating and celebrating people.
I need to write when everything is mundane too!
Amelia is suddenly opinionated, sassy and direct.
People's feelings suddenly get hurt because they are no longer number 1 or immediately thought of by her!
Teenage hood has finally hit at 15 years old.
She has a life goal and career goal for the future suddenly.
It involves animals, love AND cuddles.
(if she COMES HOME with them regularly, there will be a problem!)
Tom has started at a new high school that HE CHOSE.
I put capital letters because he was very opinionated about leaving ALL of his friends and going to this particular school.
He left all of his friends, since prep, and said "I will learn better"".
Ok.
Amelia is amazing right now.
(regular medical issues that seem to take a phone call or appointment to regulate or fix).
She is still regressing, BUT she is still HERE!
Tom will always be my handful that keeps me from crying about Amelia in the corner.
AN AMAZING HANDFUL that hugs me and kisses me daily.
I asked regularly when he was in kindergarten and early years school if he was autistic or ADD or ADHD.
Staff members would stare at me in disbelief.
I was always treated like he was just "a handful".\
I always felt like he was "the naughty child".
Recently I learnt about channeling the intellect and the energy.
Tom is incredibly clever but can join the "bad kids" immediately, if permitted.
We have all learnt that including Tom.
I am now finally learning that Tom is beyond amazing.
He has a lot of capability in that brain of his.
BUT to rewind...............
I have no expectation.....
Amelia has no expectation at the end.
Amelia has many medical appointments and mum is finally leaving the house again to work.
Mum is cleaning peoples houses.
People who understand that we may end up in hospital again.
Life is good right now !
Amanda Nicholds xxx
I originally learnt that I could write my feelings in December 2010.
It was a very new discovery and blew everyone close to me away.
"You can write!" they said.
I would write at 1pm or 1am, because my daughter had just been diagnosed with a terminal illness.
TERMINAL.
I needed to empty my mind of the pain and hurt.
I had just been told that my 7 year old child was going to die at anytime and there was no cure.
Writing helped me sleep, talk and LIVE.
"No regrets at the end" became my motto, and "An amazing life".
I am proud of accomplishing this so far and looking at my amazing family, I feel overwhelming happiness and an overwhelming sense of achievement.
I fuck up regularly and Tom has occasional moments......
But I have made many mistakes and lost many friends.
I have also seen other peoples true colours and enjoyed their departure from our lives.
The silent support has seen Scott in keeping me going and grounded.
I am loud and he is quiet.
BUT......... I need to also write when everything is going well!
I forget about that.
Everyone here is always so supportive and has followed us from the beginning.
I write about bad and sad things.
I write about celebrity meetings.
I write about thanking, congratulating and celebrating people.
I need to write when everything is mundane too!
Amelia is suddenly opinionated, sassy and direct.
People's feelings suddenly get hurt because they are no longer number 1 or immediately thought of by her!
Teenage hood has finally hit at 15 years old.
She has a life goal and career goal for the future suddenly.
It involves animals, love AND cuddles.
(if she COMES HOME with them regularly, there will be a problem!)
Tom has started at a new high school that HE CHOSE.
I put capital letters because he was very opinionated about leaving ALL of his friends and going to this particular school.
He left all of his friends, since prep, and said "I will learn better"".
Ok.
Amelia is amazing right now.
(regular medical issues that seem to take a phone call or appointment to regulate or fix).
She is still regressing, BUT she is still HERE!
Tom will always be my handful that keeps me from crying about Amelia in the corner.
AN AMAZING HANDFUL that hugs me and kisses me daily.
I asked regularly when he was in kindergarten and early years school if he was autistic or ADD or ADHD.
Staff members would stare at me in disbelief.
I was always treated like he was just "a handful".\
I always felt like he was "the naughty child".
Recently I learnt about channeling the intellect and the energy.
Tom is incredibly clever but can join the "bad kids" immediately, if permitted.
We have all learnt that including Tom.
I am now finally learning that Tom is beyond amazing.
He has a lot of capability in that brain of his.
BUT to rewind...............
I have no expectation.....
Amelia has no expectation at the end.
Amelia has many medical appointments and mum is finally leaving the house again to work.
Mum is cleaning peoples houses.
People who understand that we may end up in hospital again.
Life is good right now !
Amanda Nicholds xxx
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