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
Saturday, 9 November 2019
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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