Hello!
Just a quick post to wish you all an amazing holiday period and finish to 2018.
We are about to "get away" and leave amazing people to look after our furbabies.
Who cares about the house and possesions!
We need time to reconnect as a family.
Thank you to those that did not show judgement with my posts.
(I have learnt from you).
Thank you to those that knew and understood my emotional rants.
(I have learnt from you too).
Thank you to those that accepted my apologies and admittion of my fault this year,
(My biggest learning, appreciation and growth SO far this year).
Thank you to those that now spend regular hours at our house here and see us for who we truly are.
Vikki, Megan, Jasna and Kerryn, we all love you dearly and 100% welcome you into our lives and weirdness.
Thank you to everyone for accepting my children at the stages they are at.
And for the emotional / grief .
A-T is horrible and unpredicative.
So are friends.
Next year is new, massive and a fresh start for me and mainly Tom.
And Scott and Amelia.
Mainly because of me.
I am sorry that my Individual posts scarred so many this year.
My pain likes to lash out to anyone and everyone.
I am learning.
Bring on 2019.
Love and a Million Hugs.
See you in 2019 xxx
Tuesday 25 December 2018
Friday 21 September 2018
Amelia's Fluffy Unicorns 2018
Hello dear friends,
(Please survive my whinge at the beginning to get to the good bit)
We have had a shit week.
Shit is the right word to use, because there has been lots of shit from poor Amelia.
And vomit....
But give me vomit anyday, not smelly, runny SHIT!
Imagine the urge of gastro and not being able to run to the toilet.
I only cried once this week....
Looking at my daughter lying on the floor in her own vomit.
(We did not make it and I could not hold her as we slipped in it).
I always hold and support her and this time I failed.
It is 9pm and we have just returned from the doctors and chemist to avoid driving in to rch, because she now has a UTI and keytones climbing.
UTI from all the shit and keytones from Type 1 diabetes (not eating, barely any insulin and having an infection).
Tonight as I was getting her ready for bed, she turned green in front of me.
(A UTI can have a flu like/mastitis like reaction. It knocks you for six. So can diabetes).
I cracked it (at 7:30pm) and threw her in the car and took her to the local GP.
We are best buddies with them, so they did not hesitate to see her.
Amelia is on an antibiotic now.
But the stern warning from the doctor was "If her keytones rise anymore, you MUST take her straight in".
Great. Thanks.
Diabetes wants to kick my arse at the moment!
There is also the fear of Tom and his levels over the weekend......
(will continue that story later)
WHINGE OVER!
NOW FOR THE GOOD STUFF.
(bet you are all pleading "YES PLEASE" now!)
A beautiful friend, (lets call her Emma *), has established a Relay for Life team ALL for Amelia.
Amelia has had control of everything, thanks to Emma.
The name, the fundraising, the decorations, the theme for costumes AND the organisation.
I thank Emma for involving Amelia so much.
Many of you would remember Amelia's first Relay for Life 2 years ago.
We were in a team for a close friends son, that had passed away from brain cancer, days after Amelia was cured of ovarian cancer.
It was a very confusing and bittersweet time. Still is.
BJ was only 6 years old.
Today BJ would have turned 9 years old.
Amelia had begun travelling through PTSD during relay in 2016.
BJ had passed.
She hated everyone and the world.
She was mildly aggressive and very angry.
She did not want to go to school "because I am different now".
The main cause of Post Traumatic Stress Disorder is the extreme feeling that you are going to die.
That you WILL die.
Amelia felt it.
I felt it on numerous occasions (especially that 15 minutes in surgery) and many of you felt it may be the end result in 2016.
The very first lap of relay, at 4pm on the Saturday, is the "Survivor/Carer" lap.
In 2016, I will never forget the incredibly vivid memory of watching Amelia drive her wheelchair around that 800 metres.
SO MANY of our friends and family were on the sidelines cheering her as she passed, that I clearly saw the recognition within her.....the acceptance and the understanding....
I AM A SURVIVOR.
I survived Cancer.
There is video of her saying "I think I am going to cry mum".
In 2017 we joined the amazing Liv's team.
A child currently in Grade 6, that has been battling spinal and brain cancer for a number of years.
We are honoured to have them join our team this year.
There is no word for Cancer.
It is beyond evil.
Especially to children.
By doing things like this weekend, we are contributing to eradicating it from earth.
In the last 24 hours, we have lost another A-T child to cancer.
Skylar was Amelia's age and was diagnosed with lymphoma a few months after Amelia's cancer.
Skylar passed away Thursday.
An amazing, dedicated member of our 2018 relay team has had to back out because her beautiful mum is in the final days of life, due to cancer.
Cancer sucks.
BUT BUT BUT BUT BUT
Relay for life is empowering, fun, inspiring and humbling.
It is a carnival-like atmosphere and reminds you of how people volunteer their time to help eradicate cancer.
There is nothing like walking at 4am, knowing you are there to help stop cancer affect anyone else.
This blog has been a lot longer than I planned.
I am sorry.
If you want and if you can.....
Come to Ballam Park Athletics track tomorrow to help the world get rid of cancer (or at least the cancer council!).
It starts at 4pm Saturday and ends at 11am Sunday.
Come and say hello, buy one of our cookies or cupcakes and contribute to our team that Emma* created,.
A massive thank you to those that either joined our team or doanted!
Tom and I, and many others, are staying overnight (God help me) because Tom has set himself a goal to walk 150 laps. Last year he walked 70 (which was a massive effort!) and now Mr Competitive wants to dramatically beat that by staying overnight.
HELLO HYPO'S!
(low diabetes levels)
I am dreading keeping his diabetes safe, but understand his commitment and dedication.
To end my "all over the place" blog....
Please have your fingers crossed for the Melbourne Demons to make the AFL final!
They play at 3:20pm tomorrow.
Tonight Tom found out that I did not enter him into the Melbourne Demons Membership ballot, in case they finally make the Grand Final.
I explained that it is for only 1 ticket.
He began gasping and staring at me in WTF?!?!
"What?! Do you expect me to take you and then sit out the front until the game is finished?! YOU are 12 years old and cannot attend alone".
"NO!" he responds.
"You wouldn't have to sit out the front! I would catch the train home!".
12 bloody years old!!!!!!!
Come to relay and come and say Hi.
A lot of effort has gone into decorating our area for Amelia.
Fingers Crossed that she is there.
xxx
* Emma is not her real name.
It is actually Mother Teresa, but we have chosen to conceal her identity.
(Please survive my whinge at the beginning to get to the good bit)
We have had a shit week.
Shit is the right word to use, because there has been lots of shit from poor Amelia.
And vomit....
But give me vomit anyday, not smelly, runny SHIT!
Imagine the urge of gastro and not being able to run to the toilet.
I only cried once this week....
Looking at my daughter lying on the floor in her own vomit.
(We did not make it and I could not hold her as we slipped in it).
I always hold and support her and this time I failed.
It is 9pm and we have just returned from the doctors and chemist to avoid driving in to rch, because she now has a UTI and keytones climbing.
UTI from all the shit and keytones from Type 1 diabetes (not eating, barely any insulin and having an infection).
Tonight as I was getting her ready for bed, she turned green in front of me.
(A UTI can have a flu like/mastitis like reaction. It knocks you for six. So can diabetes).
I cracked it (at 7:30pm) and threw her in the car and took her to the local GP.
We are best buddies with them, so they did not hesitate to see her.
Amelia is on an antibiotic now.
But the stern warning from the doctor was "If her keytones rise anymore, you MUST take her straight in".
Great. Thanks.
Diabetes wants to kick my arse at the moment!
There is also the fear of Tom and his levels over the weekend......
(will continue that story later)
WHINGE OVER!
NOW FOR THE GOOD STUFF.
(bet you are all pleading "YES PLEASE" now!)
A beautiful friend, (lets call her Emma *), has established a Relay for Life team ALL for Amelia.
Amelia has had control of everything, thanks to Emma.
The name, the fundraising, the decorations, the theme for costumes AND the organisation.
I thank Emma for involving Amelia so much.
Many of you would remember Amelia's first Relay for Life 2 years ago.
We were in a team for a close friends son, that had passed away from brain cancer, days after Amelia was cured of ovarian cancer.
It was a very confusing and bittersweet time. Still is.
BJ was only 6 years old.
Today BJ would have turned 9 years old.
Amelia had begun travelling through PTSD during relay in 2016.
BJ had passed.
She hated everyone and the world.
She was mildly aggressive and very angry.
She did not want to go to school "because I am different now".
The main cause of Post Traumatic Stress Disorder is the extreme feeling that you are going to die.
That you WILL die.
Amelia felt it.
I felt it on numerous occasions (especially that 15 minutes in surgery) and many of you felt it may be the end result in 2016.
The very first lap of relay, at 4pm on the Saturday, is the "Survivor/Carer" lap.
In 2016, I will never forget the incredibly vivid memory of watching Amelia drive her wheelchair around that 800 metres.
SO MANY of our friends and family were on the sidelines cheering her as she passed, that I clearly saw the recognition within her.....the acceptance and the understanding....
I AM A SURVIVOR.
I survived Cancer.
There is video of her saying "I think I am going to cry mum".
In 2017 we joined the amazing Liv's team.
A child currently in Grade 6, that has been battling spinal and brain cancer for a number of years.
We are honoured to have them join our team this year.
There is no word for Cancer.
It is beyond evil.
Especially to children.
By doing things like this weekend, we are contributing to eradicating it from earth.
In the last 24 hours, we have lost another A-T child to cancer.
Skylar was Amelia's age and was diagnosed with lymphoma a few months after Amelia's cancer.
Skylar passed away Thursday.
An amazing, dedicated member of our 2018 relay team has had to back out because her beautiful mum is in the final days of life, due to cancer.
Cancer sucks.
BUT BUT BUT BUT BUT
Relay for life is empowering, fun, inspiring and humbling.
It is a carnival-like atmosphere and reminds you of how people volunteer their time to help eradicate cancer.
There is nothing like walking at 4am, knowing you are there to help stop cancer affect anyone else.
This blog has been a lot longer than I planned.
I am sorry.
If you want and if you can.....
Come to Ballam Park Athletics track tomorrow to help the world get rid of cancer (or at least the cancer council!).
It starts at 4pm Saturday and ends at 11am Sunday.
Come and say hello, buy one of our cookies or cupcakes and contribute to our team that Emma* created,.
A massive thank you to those that either joined our team or doanted!
Tom and I, and many others, are staying overnight (God help me) because Tom has set himself a goal to walk 150 laps. Last year he walked 70 (which was a massive effort!) and now Mr Competitive wants to dramatically beat that by staying overnight.
HELLO HYPO'S!
(low diabetes levels)
I am dreading keeping his diabetes safe, but understand his commitment and dedication.
To end my "all over the place" blog....
Please have your fingers crossed for the Melbourne Demons to make the AFL final!
They play at 3:20pm tomorrow.
Tonight Tom found out that I did not enter him into the Melbourne Demons Membership ballot, in case they finally make the Grand Final.
I explained that it is for only 1 ticket.
He began gasping and staring at me in WTF?!?!
"What?! Do you expect me to take you and then sit out the front until the game is finished?! YOU are 12 years old and cannot attend alone".
"NO!" he responds.
"You wouldn't have to sit out the front! I would catch the train home!".
12 bloody years old!!!!!!!
Come to relay and come and say Hi.
A lot of effort has gone into decorating our area for Amelia.
Fingers Crossed that she is there.
xxx
* Emma is not her real name.
It is actually Mother Teresa, but we have chosen to conceal her identity.
Saturday 25 August 2018
TOM's First AFL Grand final!
Hello Dear Friends,
Tom is in his first Grand Final tomorrow for AFL Football!
His own team and in his own game and in his own age group.
Under 12!
So young, but actually so important.
All of the kids have watched their supported AFL Professional teams in games, finals, brownlow medals and best'n'fairest for so long (possibly ALL of their lives)......this is HUGE!
OUR TEAM has made the Grand Final!
HUGE!
Tom is actually playing after 6 years of Junior Football.
HE IS ACTUALLY PLAYING A FINAL!
BUT.....
My blog is for SO much more.....
We have a coach (X 3 YEARS) , team manager (past and present), runners (x 3 years), trainer/s(x 3 years), ground marshall/s, Interchange Steward, umpire, goal umpire, Committee Members, loving parent supporters etc.......
THANK YOU.
Whether we win the Grand Final or not....
YOU have all been awesome!!!!!!!!
Thank You Dave Kelly, as we know this is your last year.
Thank you for treating our son as your own in training and games.
You know our situation of having an older child with a terminal illness, BUT you treat every child equally.
Fairness in life for everyone is equal.
Tom's skills at his age needs to be measured equally, against everyone else.
We all understand that.
Tomorrow and every game is about skill and game pressure...........
Go Langy Whites, Under 12's for tomorrow at 2:20PM!
Tom is in his first Grand Final tomorrow for AFL Football!
His own team and in his own game and in his own age group.
Under 12!
So young, but actually so important.
All of the kids have watched their supported AFL Professional teams in games, finals, brownlow medals and best'n'fairest for so long (possibly ALL of their lives)......this is HUGE!
OUR TEAM has made the Grand Final!
HUGE!
Tom is actually playing after 6 years of Junior Football.
HE IS ACTUALLY PLAYING A FINAL!
BUT.....
My blog is for SO much more.....
We have a coach (X 3 YEARS) , team manager (past and present), runners (x 3 years), trainer/s(x 3 years), ground marshall/s, Interchange Steward, umpire, goal umpire, Committee Members, loving parent supporters etc.......
THANK YOU.
Whether we win the Grand Final or not....
YOU have all been awesome!!!!!!!!
Thank You Dave Kelly, as we know this is your last year.
Thank you for treating our son as your own in training and games.
You know our situation of having an older child with a terminal illness, BUT you treat every child equally.
Fairness in life for everyone is equal.
Tom's skills at his age needs to be measured equally, against everyone else.
We all understand that.
Tomorrow and every game is about skill and game pressure...........
Go Langy Whites, Under 12's for tomorrow at 2:20PM!
Thursday 2 August 2018
Homeless and happy
Hello dear friends!
(I have permission to post this from the family. I do not name anyone).
This last week has been an eye opener.
I have been astounded by how a life, situation and family can end up in a difficult situation so quickly.
Ten days ago, I was asked to house one of Tom's friends for a few days as the family was homeless.
HOMELESS?!
I did not hesitate to say yes.
This child had already stayed here numerous times this year and it was easy to "slot him in" with our family and house routine.
I did not really know the rest of the family.
The mother mentioned she would drop him around the following night.
I arrived home crying that night, after picking Tom up from his snow excursion.
Where were they sleeping that night?
How is this happening to them?
The next night the child was dropped off.
I asked the mother where she and the 2 daughters were going to sleep that night.
She could not give me an answer.
I told her that I could not let her leave then.
They would all just stay here.
Then I needed to ring Scott at work and tell him!
He was awesome and agreed with me.
This family just needed a roof, heat and safety.
Food, showers and washing machine.
All the things we all take for granted (and yet struggle to pay for!).
The mother was then able to organise herself and their future.
She works, but has no rental history, so getting a rental was going to be difficult.
After receiving a house through Centrelink (very lucky and a fluke), I realised they had NO furniture or appliances.
No bedding, towels, cutlery and not much clothing.
I asked for the mothers permission to post something on my Facebook account/s.
She was extremely accepting and grateful.
"Be warned" I said.
"It is going to happen very fast and quickly.
Anyone following Amelia and still friends with us is very kind and generous.
WE will need to be organised and ready to pick stuff up for you straight away".
Within 24 hours we had enough furniture to fill 2 houses!
THANK YOU!
Thank you to the person that drove 1 hour (each way) to deliver all of her excess plates, bowls and cups.
Thank you to the person that donated all of the furniture and appliances from her recently deceased family members household.
There were SO many others.
It is too many to list!
The offer of clothing, towels and bedding here AND still to come is greatly appreciated.
While everyone here has coped as well as they could for the past 8 days, (lunch, snack, medication and coffee for 8 people at 8am!), Tom and his mate treated the whole experience as a celebration sleepover!!!!!!
It has made the whole experience funnier and easier.
They treated packing the car up today as a funeral procession though!
The body language and facial demeanor was priceless!
No more PS4 Fortnite....... yelling out to each other the past 8 days while gaming (WITH HEADPHONE.... MICROPHONE mouth pieces!).
They were in the same f'n house for a week.!
This child will not have Internet for a while obviously.
Amelia struggled greatly with lack of sleep, constant noise, change of routine and mum (ME!) not as responsive to her.
School was worried about her and so were others.
Eventually I said to her "Do you want them all living in their car again?!".
Amelia and the 7 year old had established a beautiful relationship by this stage, created through a donut making app on Apple.
LOL
Amelia said "No. I am her pretend big sister now. I want her here".
In our situation it has worked well.
I am home (as a full time carer) so cooking, washing and cleaning needed to change from 4 people to 8 people.
Their insight to our life and coping mechanisms and vice versa has been fully opened and seen.
MY MESSAGE HERE?
Be open, communicative and acceptive of differences for anyone and everyone.
Don't assume laziness, bad choices or wasted money as the answer (all those happened here).
Sometimes advice and new directive is needed.
We accepted and helped on bad choices this week.
We have ALL made bad choices in our lifetime/s.
YOU have helped me to set this family up in a new life, a new pathway and beginning with your advice and assistance.
YOU have assisted us with so much for Amelia it is too looooooong to list right now.
I was able to pre-warn this family of your possible response with their difficulty, because kindness is massive on this page,
This evening Scott was approached by his boss
"I hear that you have taken in a family that is homeless. Why am I only hearing about this now?".
"All is good" Scott said.
"I received a call here last week that they were moving in. My wife said they would be there when I got home. I trusted and agreed with her. Hard to make my take away coffee in the morning though. Too many people in the kitchen!"
Scott rolls with the punches and accepts the family and choices they make!
Tonight they have a house with blow up mattresses, heating and take away (their choice) before they get their permanent essentials.
They need to reconnect and bond again as a family.
Thank you for your help.
You are all amazing xxx
(I will check in with the family daily xxx)
P.S
I forgot about the Head Cold I recently caught and can barely function.
P.P.S
I forgot about the 8 year old Pug dog we are minding (organised months ago) that arrived a fewdays ago.
BUT WE ARE ALL GOOD.
Alcohol should be delivered to........
LOL
(I have permission to post this from the family. I do not name anyone).
This last week has been an eye opener.
I have been astounded by how a life, situation and family can end up in a difficult situation so quickly.
Ten days ago, I was asked to house one of Tom's friends for a few days as the family was homeless.
HOMELESS?!
I did not hesitate to say yes.
This child had already stayed here numerous times this year and it was easy to "slot him in" with our family and house routine.
I did not really know the rest of the family.
The mother mentioned she would drop him around the following night.
I arrived home crying that night, after picking Tom up from his snow excursion.
Where were they sleeping that night?
How is this happening to them?
The next night the child was dropped off.
I asked the mother where she and the 2 daughters were going to sleep that night.
She could not give me an answer.
I told her that I could not let her leave then.
They would all just stay here.
Then I needed to ring Scott at work and tell him!
He was awesome and agreed with me.
This family just needed a roof, heat and safety.
Food, showers and washing machine.
All the things we all take for granted (and yet struggle to pay for!).
The mother was then able to organise herself and their future.
She works, but has no rental history, so getting a rental was going to be difficult.
After receiving a house through Centrelink (very lucky and a fluke), I realised they had NO furniture or appliances.
No bedding, towels, cutlery and not much clothing.
I asked for the mothers permission to post something on my Facebook account/s.
She was extremely accepting and grateful.
"Be warned" I said.
"It is going to happen very fast and quickly.
Anyone following Amelia and still friends with us is very kind and generous.
WE will need to be organised and ready to pick stuff up for you straight away".
Within 24 hours we had enough furniture to fill 2 houses!
THANK YOU!
Thank you to the person that drove 1 hour (each way) to deliver all of her excess plates, bowls and cups.
Thank you to the person that donated all of the furniture and appliances from her recently deceased family members household.
There were SO many others.
It is too many to list!
The offer of clothing, towels and bedding here AND still to come is greatly appreciated.
While everyone here has coped as well as they could for the past 8 days, (lunch, snack, medication and coffee for 8 people at 8am!), Tom and his mate treated the whole experience as a celebration sleepover!!!!!!
It has made the whole experience funnier and easier.
They treated packing the car up today as a funeral procession though!
The body language and facial demeanor was priceless!
No more PS4 Fortnite....... yelling out to each other the past 8 days while gaming (WITH HEADPHONE.... MICROPHONE mouth pieces!).
They were in the same f'n house for a week.!
This child will not have Internet for a while obviously.
Amelia struggled greatly with lack of sleep, constant noise, change of routine and mum (ME!) not as responsive to her.
School was worried about her and so were others.
Eventually I said to her "Do you want them all living in their car again?!".
Amelia and the 7 year old had established a beautiful relationship by this stage, created through a donut making app on Apple.
LOL
Amelia said "No. I am her pretend big sister now. I want her here".
In our situation it has worked well.
I am home (as a full time carer) so cooking, washing and cleaning needed to change from 4 people to 8 people.
Their insight to our life and coping mechanisms and vice versa has been fully opened and seen.
MY MESSAGE HERE?
Be open, communicative and acceptive of differences for anyone and everyone.
Don't assume laziness, bad choices or wasted money as the answer (all those happened here).
Sometimes advice and new directive is needed.
We accepted and helped on bad choices this week.
We have ALL made bad choices in our lifetime/s.
YOU have helped me to set this family up in a new life, a new pathway and beginning with your advice and assistance.
YOU have assisted us with so much for Amelia it is too looooooong to list right now.
I was able to pre-warn this family of your possible response with their difficulty, because kindness is massive on this page,
This evening Scott was approached by his boss
"I hear that you have taken in a family that is homeless. Why am I only hearing about this now?".
"All is good" Scott said.
"I received a call here last week that they were moving in. My wife said they would be there when I got home. I trusted and agreed with her. Hard to make my take away coffee in the morning though. Too many people in the kitchen!"
Scott rolls with the punches and accepts the family and choices they make!
Tonight they have a house with blow up mattresses, heating and take away (their choice) before they get their permanent essentials.
They need to reconnect and bond again as a family.
Thank you for your help.
You are all amazing xxx
(I will check in with the family daily xxx)
P.S
I forgot about the Head Cold I recently caught and can barely function.
P.P.S
I forgot about the 8 year old Pug dog we are minding (organised months ago) that arrived a fewdays ago.
BUT WE ARE ALL GOOD.
Alcohol should be delivered to........
LOL
Thursday 19 July 2018
15 and SASSY
Hello dear friends!
Apologies for the delay in writing recently, but we have been quite busy.
I have also not felt the need to.
My depression and grief has eased.
Scott said to me recently "It is weird without you blogging. People are actually asking how we are, because they don't know!".
Anyway.....
After writing for so long about my emotions of a parent of a child with a terminal disability (2010) and health issue AND another child with a serious health issue (2013)......
I do not know what angle I should take here now.....
Scott's new job that is directly helping those with a disability....?
(It is awesome!)
Tom's new role of being male and entering puberty...…
OR
having difficulty at school suddenly....
Tom may have met his match with his teacher!
OR......
traveling Interstate on his own...….
OR...…..
choosing a High School perfect for himself ?
Amelia's new role of having carers for 6 months and deciding they are better than me (don't stress. I do not take offence)...…
Clashing with people and standing up for her rights...……..
"I am not a baby. Tell them not to talk to me like that!"
Talking to carers regularly about Amelia's future and the pathway she wants to take now and in the future ?
Recently at school, Amelia was asked to create a "Business Name".
She said "Cool and Sassy"
PERFECT for her personality right now!
She is VERY snappy!
My battle with ….. EVERYTHING and WHATEVER!
My battle with depression, anxiety and saying goodbye to my career (that I worked VERY hard for).
My battle with Amelia and Tom shoving me aside, as I ask others to enter and assist.
NDIS has been awesome, BUT a massive workload.
Soooooo much to organise and approve through the proper channels.
I have listed what I want for Amelia (she added lots too) and now we need to get the proper assessments for it all.
I WILL SUCCEED.
Our amazing friend, also with A-T, , a few hours away, turned 21 today.
"THEY NEVER SAID I WOULD LIVE THIS LONG" Caitlin Caruso said.
Exactly what we were told.
HAPPY BIRTHDAY CAITLIN.
As with any kid that we meet or enters our house, we adore you!
Maybe we will watch Descendents 3 together soon!
I and We are good and not good.
As with any teenager (especially one who is desperate for Independence!)
Sorry.
VERY blaze and non descriptive.
But we are tired.
We are busy.
We are good xxx
Apologies for the delay in writing recently, but we have been quite busy.
I have also not felt the need to.
My depression and grief has eased.
Scott said to me recently "It is weird without you blogging. People are actually asking how we are, because they don't know!".
Anyway.....
After writing for so long about my emotions of a parent of a child with a terminal disability (2010) and health issue AND another child with a serious health issue (2013)......
I do not know what angle I should take here now.....
Scott's new job that is directly helping those with a disability....?
(It is awesome!)
Tom's new role of being male and entering puberty...…
OR
having difficulty at school suddenly....
Tom may have met his match with his teacher!
OR......
traveling Interstate on his own...….
OR...…..
choosing a High School perfect for himself ?
Amelia's new role of having carers for 6 months and deciding they are better than me (don't stress. I do not take offence)...…
Clashing with people and standing up for her rights...……..
"I am not a baby. Tell them not to talk to me like that!"
Talking to carers regularly about Amelia's future and the pathway she wants to take now and in the future ?
Recently at school, Amelia was asked to create a "Business Name".
She said "Cool and Sassy"
PERFECT for her personality right now!
She is VERY snappy!
My battle with ….. EVERYTHING and WHATEVER!
My battle with depression, anxiety and saying goodbye to my career (that I worked VERY hard for).
My battle with Amelia and Tom shoving me aside, as I ask others to enter and assist.
NDIS has been awesome, BUT a massive workload.
Soooooo much to organise and approve through the proper channels.
I have listed what I want for Amelia (she added lots too) and now we need to get the proper assessments for it all.
I WILL SUCCEED.
Our amazing friend, also with A-T, , a few hours away, turned 21 today.
"THEY NEVER SAID I WOULD LIVE THIS LONG" Caitlin Caruso said.
Exactly what we were told.
HAPPY BIRTHDAY CAITLIN.
As with any kid that we meet or enters our house, we adore you!
Maybe we will watch Descendents 3 together soon!
I and We are good and not good.
As with any teenager (especially one who is desperate for Independence!)
Sorry.
VERY blaze and non descriptive.
But we are tired.
We are busy.
We are good xxx
Sunday 3 June 2018
My Beautiful, Sweet 15 year old.
Hello Dear Friends,
7.5 years ago I began writing about our child's horrible diagnosis.
Amelia was 7.5 years old.
Fast Forward 7.5 years and she turns 15 years old tomorrow.
MAJOR MILESTONE from the day in December 2010, when the hospital told us to "go home and cherish every single day. There is nothing we can do".
You all now what we have gone through and what Amelia has "lost" in the last 7.5 years.
So many of you are right beside her regularly or have been at various times along the journey.
Many of you have followed our journey through my writing.
Those closest to Amelia may struggle, fail in many areas and outplay emotions irregularly.........
(it is hard to live in this house and watch and help with the daily struggle).
BUT what her life, her personality and her words have taught us, is life changing.
I like to think of this trait as "what she has gained".
She regularly alters a persons "life pathway" and makes them see their life differently, without realising it herself.
I know she has changed my life greatly since she was born.
I now sit back and enjoy watching it happen to others.
Happy 15th Birthday beautiful, sweet Amelia.
May your week of celebrations bring you great joy.
May your long lists, demands and requests end after your birthday week!!!!!!
I am exhausted!
Some photos of Amelia's life so far follow.
xxx
We look forward to celebrating so many more years with you.
xxx
7.5 years ago I began writing about our child's horrible diagnosis.
Amelia was 7.5 years old.
Fast Forward 7.5 years and she turns 15 years old tomorrow.
MAJOR MILESTONE from the day in December 2010, when the hospital told us to "go home and cherish every single day. There is nothing we can do".
You all now what we have gone through and what Amelia has "lost" in the last 7.5 years.
So many of you are right beside her regularly or have been at various times along the journey.
Many of you have followed our journey through my writing.
Those closest to Amelia may struggle, fail in many areas and outplay emotions irregularly.........
(it is hard to live in this house and watch and help with the daily struggle).
BUT what her life, her personality and her words have taught us, is life changing.
I like to think of this trait as "what she has gained".
She regularly alters a persons "life pathway" and makes them see their life differently, without realising it herself.
I know she has changed my life greatly since she was born.
I now sit back and enjoy watching it happen to others.
Happy 15th Birthday beautiful, sweet Amelia.
May your week of celebrations bring you great joy.
May your long lists, demands and requests end after your birthday week!!!!!!
I am exhausted!
Some photos of Amelia's life so far follow.
xxx
We look forward to celebrating so many more years with you.
xxx
Tuesday 8 May 2018
How Would You Feel? By Tommy Nicholds
How Would You Feel?
By Tommy Nicholds
11 Years Old.
How would you feel if your sibling could not walk for the rest of their life?
Well, my sister can't, because she has a brain disease by the name of Ataxia Telangiectasia.
Yes, It's a mouthful!
It is also commonly known as A-T.
Today I am going to be talking about how it affects my life and also how we can find a cure.
Over the last year and 3 months, Mum and Amelia, my sister, have gone into hospital at least 5 times, which is very hard being separated from each other.
The occasion that I will be talking about today was in June 2016, when Amelia was diagnosed with Ovarian Cancer (which is one of the complications of A-T).
I don't know the exact date, but it was a Friday night after school, and I was told to got to my Poppy's house, when the school bell went.
Why?
Mum always picks me up.
(Around June 2016)
When I got to my Poppy's house, they sat me down and we had a discussion with Amelia and Mum on FaceTime.
Amelia was really sick and no one knew why.
Mum and Poppy seemed scared.
Amelia was crying about the tests they were doing to Amelia.
That night I was very worried, because no one knew what was going on.
Everyone seemed worried and scared.
The following next week, the doctors found out that Amelia had a 14 cm wide tumour, which was full with 1 Litre of Fluid.
I didn't know much about cancer, but I still broke down in tears , because I knew it was dangerous.
That week I was very down and emotional because I didn't get to see anyone in the family, since dad still had to work.
I couldn't help but cry in bed some nights.
I really love Amelia and always have.
I am only 11 years old.
My teacher was very supportive that week, because I would come in each morning and fill her in with all the news.
During the day she would sit our whole class down and explain what was happening with Amelia and then all the other kids in my class would share their stories about families and friends that have experienced cancer and other scares.
It was a week before my 10th Birthday (2016), and I was begging mum to come home for the weekend.
I began begging mum to come home for my 10th birthday weekend.
They did, which restored my happiness.
(I now Know how much work this took)
An hour before my birthday party, Mum explained that Amelia had become a lot worse.
They had to leave straight after the party to return to RCH.
I was devastated and it was in the back of my mind during my entire 10th birthday party.
Mum and Amelia are about to leave indefinitely.
Amelia may die from this.
Will Amelia return from this operation that everyone is so scared about?
Two days later, doctors performed an operation to get the massive ovarian tumour out of Amelia.
People all over the world wore pink to show their support of Amelia.
That day I was feeling nervous about Amelia and nervous and this operation.
I began to channel my happiness into seeing all of my friends wearing pink at school, and seeing Amelia and Mum later that week.
The Operation was a success.
Now I am coming back to the present day, where Amelia wakes up smiling, laughing and playing with her friends, every single day.
That to me is true inspiration..
Thankyou for listening to my story about our family.
I hope I made a difference.
Amelia is amazing.
By Tommy Nicholds
11 Years Old.
How would you feel if your sibling could not walk for the rest of their life?
Well, my sister can't, because she has a brain disease by the name of Ataxia Telangiectasia.
Yes, It's a mouthful!
It is also commonly known as A-T.
Today I am going to be talking about how it affects my life and also how we can find a cure.
Over the last year and 3 months, Mum and Amelia, my sister, have gone into hospital at least 5 times, which is very hard being separated from each other.
The occasion that I will be talking about today was in June 2016, when Amelia was diagnosed with Ovarian Cancer (which is one of the complications of A-T).
I don't know the exact date, but it was a Friday night after school, and I was told to got to my Poppy's house, when the school bell went.
Why?
Mum always picks me up.
(Around June 2016)
When I got to my Poppy's house, they sat me down and we had a discussion with Amelia and Mum on FaceTime.
Amelia was really sick and no one knew why.
Mum and Poppy seemed scared.
Amelia was crying about the tests they were doing to Amelia.
That night I was very worried, because no one knew what was going on.
Everyone seemed worried and scared.
The following next week, the doctors found out that Amelia had a 14 cm wide tumour, which was full with 1 Litre of Fluid.
I didn't know much about cancer, but I still broke down in tears , because I knew it was dangerous.
That week I was very down and emotional because I didn't get to see anyone in the family, since dad still had to work.
I couldn't help but cry in bed some nights.
I really love Amelia and always have.
I am only 11 years old.
My teacher was very supportive that week, because I would come in each morning and fill her in with all the news.
During the day she would sit our whole class down and explain what was happening with Amelia and then all the other kids in my class would share their stories about families and friends that have experienced cancer and other scares.
It was a week before my 10th Birthday (2016), and I was begging mum to come home for the weekend.
I began begging mum to come home for my 10th birthday weekend.
They did, which restored my happiness.
(I now Know how much work this took)
An hour before my birthday party, Mum explained that Amelia had become a lot worse.
They had to leave straight after the party to return to RCH.
I was devastated and it was in the back of my mind during my entire 10th birthday party.
Mum and Amelia are about to leave indefinitely.
Amelia may die from this.
Will Amelia return from this operation that everyone is so scared about?
Two days later, doctors performed an operation to get the massive ovarian tumour out of Amelia.
People all over the world wore pink to show their support of Amelia.
That day I was feeling nervous about Amelia and nervous and this operation.
I began to channel my happiness into seeing all of my friends wearing pink at school, and seeing Amelia and Mum later that week.
The Operation was a success.
Now I am coming back to the present day, where Amelia wakes up smiling, laughing and playing with her friends, every single day.
That to me is true inspiration..
Thankyou for listening to my story about our family.
I hope I made a difference.
Amelia is amazing.
Tuesday 1 May 2018
Hello Friends,
I recently published this blog without finishing it properly.
I would like to finish it properly now!
We are all travelling really well right now and I am so incredibly proud of us all.
We are surviving and all feel SO loved.
(I will update about Amelia's hands and NOW feet at a later stage.
Degression and A-T are savage and nasty.)
Please enjoy some ok stuff for now.
I recently passed someone so bitter and mean, in the street, that it made me actually happy.
They are gone out of our lives now!
Toxic people are now gone.
100% gone!
Scott has just changed employment.
It is a role that took 2.5 months of tests and interviews to get and we are all incredibly proud of him, for surviving "the cull".
Scott has always had an amazing logic, street intellect and vibe.
It is a job that he will be able stay with for life.
Amelia has adapted to her new carers so well and we are all so incredibly proud of her.
(and we all really like them!)
As all of you know, I have been her main carer, since she was born.
2003.
Last year I began speaking to her about the unnatural connection we had developed.
She agreed quickly.
She was 14 years old and had never been separated from me.
She needed independence and loving connections to others.
I needed to find me again.
Amelia has fallen in love with 3 of her carers.
To watch and to listen to them has been amazing.
I know and hear that they feel the wonder of Amelia.
They have a lifetime to remember her and they are showing the impact of her on their souls.
I feel honoured to share the gift of Amelia.........
Tonight we were watching an episode of "The Voice in Australia".
The episode discussed the "medicine" of music.
People were discussing how music helped them through a death, bullying or love heartbreak.
I paused the episode to explain to the kids about how music has helped me in recent years.......
I know how I have spammed you all with music when I am really struggling........
But I really want you to close your eyes and imagine my explanation of each individual in our family tonight.
Especially when we are in a really good place and hope to stay there....
Many of you will have heard all of these already......
Get a cuppa (or wine!) and survive the ads.
Imagine the minds of our crazy family!
My message for Amelia....
It was when I finally realised that she will show me an amazing life guided by herself...... No matter how short.
https://youtu.be/jgfxmlAZUWU
My message for Tom.......
https://youtu.be/jpTYG_Sqqdg
(We are seeing 90% evidence of siblings RUNNING when 18 from a family with a disabled child. Their own sibling. We are determined to not let this happen).
From Tom....
On my own page.
"He gives everything to others" Tom said
https://youtu.be/xpVfcZ0ZcFM
On my own page, a message FROM Scott to me.....
https://youtu.be/UfmkgQRmmeE
A message from me TO Scott.....
https://www.youtube.com/watch?v=lp-EO5I60KA
BUT
For all of you.....
This one.
https://youtu.be/bwB9EMpW8eY
I will never forget this song during Amelia's cancer diagnosis.
3 weeks of all of you keeping me upright, functioning and demanding answers.
(Code Grey was also threatened when they were going to do wrong by her!)
https://youtu.be/bwB9EMpW8eY
These 2 songs have been Amelia's in the last 2 years (12-14 years old) to get her through hard times.....
https://youtu.be/xo1VInw-SKc
and
https://youtu.be/xo1VInw-SKc
THESE ARE THE NEWEST ONES....
(Tom has requested that Amelia get Bluetooth headphones, because he believes hearing them 89 times is quite sufficient).
https://youtu.be/gdjR2lvIfJ4
(she has secretly fallen for Zac Effron)
and.....
https://youtu.be/CjxugyZCfuw
This one is quite profound.
It is about anyone with "difference".
But when I asked Amelia to choose her favorite song of life.......
She chose this one....
https://www.youtube.com/watch?v=t_YXSHkAahE
Quite profound really.
She always chooses or says the things that blind side me.
I seem to absorb each child around me and "their meaning" and "purpose" a lot!
Life as a parent?!
Recently Amelia said to a new carer incredibly innocently....
" Apparently I am famous. I never meant for this to happen".
Nor did we Miss Amelia.
But when someone so incredibly profound, innocent, knowledgeable AND
MIND BLOWING as you arrives, we need to speak about it.
Your messages are always profound and mind blowing.
You have shown and proven so much in the past 8 years.
We have no choice BUT to share your words.
We may not be religious, but we can still listen.
Thank you for taking the time to listen.
xxx
I recently published this blog without finishing it properly.
I would like to finish it properly now!
We are all travelling really well right now and I am so incredibly proud of us all.
We are surviving and all feel SO loved.
(I will update about Amelia's hands and NOW feet at a later stage.
Degression and A-T are savage and nasty.)
Please enjoy some ok stuff for now.
I recently passed someone so bitter and mean, in the street, that it made me actually happy.
They are gone out of our lives now!
Toxic people are now gone.
100% gone!
Scott has just changed employment.
It is a role that took 2.5 months of tests and interviews to get and we are all incredibly proud of him, for surviving "the cull".
Scott has always had an amazing logic, street intellect and vibe.
It is a job that he will be able stay with for life.
Amelia has adapted to her new carers so well and we are all so incredibly proud of her.
(and we all really like them!)
As all of you know, I have been her main carer, since she was born.
2003.
Last year I began speaking to her about the unnatural connection we had developed.
She agreed quickly.
She was 14 years old and had never been separated from me.
She needed independence and loving connections to others.
I needed to find me again.
Amelia has fallen in love with 3 of her carers.
To watch and to listen to them has been amazing.
I know and hear that they feel the wonder of Amelia.
They have a lifetime to remember her and they are showing the impact of her on their souls.
I feel honoured to share the gift of Amelia.........
Tonight we were watching an episode of "The Voice in Australia".
The episode discussed the "medicine" of music.
People were discussing how music helped them through a death, bullying or love heartbreak.
I paused the episode to explain to the kids about how music has helped me in recent years.......
I know how I have spammed you all with music when I am really struggling........
But I really want you to close your eyes and imagine my explanation of each individual in our family tonight.
Especially when we are in a really good place and hope to stay there....
Many of you will have heard all of these already......
Get a cuppa (or wine!) and survive the ads.
Imagine the minds of our crazy family!
My message for Amelia....
It was when I finally realised that she will show me an amazing life guided by herself...... No matter how short.
https://youtu.be/jgfxmlAZUWU
My message for Tom.......
https://youtu.be/jpTYG_Sqqdg
(We are seeing 90% evidence of siblings RUNNING when 18 from a family with a disabled child. Their own sibling. We are determined to not let this happen).
From Tom....
On my own page.
"He gives everything to others" Tom said
https://youtu.be/xpVfcZ0ZcFM
On my own page, a message FROM Scott to me.....
https://youtu.be/UfmkgQRmmeE
A message from me TO Scott.....
https://www.youtube.com/watch?v=lp-EO5I60KA
BUT
For all of you.....
This one.
https://youtu.be/bwB9EMpW8eY
I will never forget this song during Amelia's cancer diagnosis.
3 weeks of all of you keeping me upright, functioning and demanding answers.
(Code Grey was also threatened when they were going to do wrong by her!)
https://youtu.be/bwB9EMpW8eY
These 2 songs have been Amelia's in the last 2 years (12-14 years old) to get her through hard times.....
https://youtu.be/xo1VInw-SKc
and
https://youtu.be/xo1VInw-SKc
THESE ARE THE NEWEST ONES....
(Tom has requested that Amelia get Bluetooth headphones, because he believes hearing them 89 times is quite sufficient).
https://youtu.be/gdjR2lvIfJ4
(she has secretly fallen for Zac Effron)
and.....
https://youtu.be/CjxugyZCfuw
This one is quite profound.
It is about anyone with "difference".
But when I asked Amelia to choose her favorite song of life.......
She chose this one....
https://www.youtube.com/watch?v=t_YXSHkAahE
Quite profound really.
She always chooses or says the things that blind side me.
I seem to absorb each child around me and "their meaning" and "purpose" a lot!
Life as a parent?!
Recently Amelia said to a new carer incredibly innocently....
" Apparently I am famous. I never meant for this to happen".
Nor did we Miss Amelia.
But when someone so incredibly profound, innocent, knowledgeable AND
MIND BLOWING as you arrives, we need to speak about it.
Your messages are always profound and mind blowing.
You have shown and proven so much in the past 8 years.
We have no choice BUT to share your words.
We may not be religious, but we can still listen.
Thank you for taking the time to listen.
xxx
Friday 13 April 2018
Real for Life and stuff!
Hello Friends,
(Please read until the end, because it is VERY important!)
High Five to all those that have survived the school holidays....the end is finally in sight!
Commiserations to those that are in the corner rocking!
(maybe the latter is just me!).
Lots of sad things have happened around us in the last 2 weeks and our love and thoughts are with many. Adored family members and very loved pets passing away is heartbreaking.
Every message has made us all sit in heartbreak and emotion.
We have also been so incredibly busy that we are all very tired!
My inability to write everything on the calendar these holidays has created a few obstacles, but we survived and still attended!
(IF YOU MESSAGE ME a get together.......please say WRITE ON CALENDAR!)
As someone very wise said to me recently "Other peoples lives is none of my business. No one knows what really happens behind anyone's front door".
I am slowly learning that and learning not to discuss things about others anymore.
Mainly my husband and children.
I can happily say that due to stress, our house is the best it has ever been!
Decluttering and tidying up the house, declutters and tidies up the mind!
I have spent 8 weeks on it and will finally finish my mission tomorrow.......
the arrival of the firewood!
Everyone knows that my fireplace is my Valium and anti depressant due to the seasonal depression I suffer.
It is like a squirrel gathering its nuts for the winter!
I cannot wait and will be sooooo prepared!
We finally had our NDIS meeting in mid March.
(National Disability Insurance Scheme. An application to get everything and anything Amelia needs and wants to help create her amazing life. Paid for by the government)
60 odd hours of work from myself and many awesome professionals around us.
Today we received word that it has had to go to "a higher body" due to the amount required and asked for. It is big and needs to be assessed closer.
Cannot wait to hear their end assessment.
(we asked for a lot)
Amelia and Tom are good.
Amelia is speaking her mind A LOT now (we have gone from one extreme to the other) and Tom.......well he has always been incredibly outspoken!
Amelia is not liking her class this year at school, but we are so proud of her for talking to us about it. We will be addressing the changes that need to be made next week. Her life is too short to think otherwise.
Tom, Scott and I are extremely confused on High School's for next year for Tom , due to Tom loving one and all of his friends going to another.
BUT we are all good.
We have a large amount of communication and an even bigger amount of love AND communication.
We may have a 14 year old who needs 100% assistance in toileting, feeding, moving, reading AND drinking......BUT she needs no help in intelligence.
Amelia had ovarian cancer.
We have been told it will return somewhere else in her body.
There are multiple organs that a "mixed germ cell tumour" could suddenly appear in apparently.
Ataxia Telangiectasia (Amelia's original diagnosis in 2010) has a major link to cancer. It is one of the major side affects of having A-T.
Amelia got it at 13 years old and it has a high probability of returning.
3 weeks ago Amelia had the regular surveillance ultrasound on her abdomen and pelvis.
RED FLAGS have been waved over the lesions on her liver (we have been keeping an eye on one and now another has started).
Blah Blah Blah Blah
Still waiting to hear.
Welcome to the life of a special needs parent.
If you can walk for 10 minutes, 30 minutes or 60 minutes for ALL cancer................
Please join our team.
Amelia is so incredibly proud to have her own team this year.
"Amelia's Fluffy Unicorns"
Could there be a better name ?!?!
As you could imagine, Tom is beside himself about asking his friends to join a team by this name!!!!!
SEPTEMBER 22 - 23 2018
4pm Saturday till 11am Sunday.
30 Mins will helps us greatly.
She has chosen the name and we all sincerely thank Emma for constantly confirming with Amelia.
Please join whether you can walk for 10 minutes or 4 hours.
ANY help is extremely appreciated.
We will continually walk from 4pm Saturday 22nd September till 11am Sunday 23rd September Sunday as a team.
Tom and Amelia are desperate to ask their friends to help them!
(please consider a unicorn anthem or costume when registering!)
BUT let me tell you all...
You have never seen anything like this.
cancer affects us all.
this organisation helps us all.
Please donate or join our very long walk below. 30 minutes would be awesome!
http://l.facebook.com/l.php?u=http%3A%2F%2Fccau.convio.net%2Fsite%2FTR%2FRelayforLife%2FCCVIC%3Fteam_id%3D60462%26pg%3Dteam%26fr_id%3D5396&h=ATObFOj5Z7EiI3scwQg1LebJQMy8ZhliufrDvA0Hl53Xxq0oUUmzUTX9Sm09Ninl-i4t1ULwOUTiw38X33YlEUP3k0gegkSeGnd3fNgTrNokA75pMiXn
xxx
(Please read until the end, because it is VERY important!)
High Five to all those that have survived the school holidays....the end is finally in sight!
Commiserations to those that are in the corner rocking!
(maybe the latter is just me!).
Lots of sad things have happened around us in the last 2 weeks and our love and thoughts are with many. Adored family members and very loved pets passing away is heartbreaking.
Every message has made us all sit in heartbreak and emotion.
We have also been so incredibly busy that we are all very tired!
My inability to write everything on the calendar these holidays has created a few obstacles, but we survived and still attended!
(IF YOU MESSAGE ME a get together.......please say WRITE ON CALENDAR!)
As someone very wise said to me recently "Other peoples lives is none of my business. No one knows what really happens behind anyone's front door".
I am slowly learning that and learning not to discuss things about others anymore.
Mainly my husband and children.
I can happily say that due to stress, our house is the best it has ever been!
Decluttering and tidying up the house, declutters and tidies up the mind!
I have spent 8 weeks on it and will finally finish my mission tomorrow.......
the arrival of the firewood!
Everyone knows that my fireplace is my Valium and anti depressant due to the seasonal depression I suffer.
It is like a squirrel gathering its nuts for the winter!
I cannot wait and will be sooooo prepared!
We finally had our NDIS meeting in mid March.
(National Disability Insurance Scheme. An application to get everything and anything Amelia needs and wants to help create her amazing life. Paid for by the government)
60 odd hours of work from myself and many awesome professionals around us.
Today we received word that it has had to go to "a higher body" due to the amount required and asked for. It is big and needs to be assessed closer.
Cannot wait to hear their end assessment.
(we asked for a lot)
Amelia and Tom are good.
Amelia is speaking her mind A LOT now (we have gone from one extreme to the other) and Tom.......well he has always been incredibly outspoken!
Amelia is not liking her class this year at school, but we are so proud of her for talking to us about it. We will be addressing the changes that need to be made next week. Her life is too short to think otherwise.
Tom, Scott and I are extremely confused on High School's for next year for Tom , due to Tom loving one and all of his friends going to another.
BUT we are all good.
We have a large amount of communication and an even bigger amount of love AND communication.
We may have a 14 year old who needs 100% assistance in toileting, feeding, moving, reading AND drinking......BUT she needs no help in intelligence.
Amelia had ovarian cancer.
We have been told it will return somewhere else in her body.
There are multiple organs that a "mixed germ cell tumour" could suddenly appear in apparently.
Ataxia Telangiectasia (Amelia's original diagnosis in 2010) has a major link to cancer. It is one of the major side affects of having A-T.
Amelia got it at 13 years old and it has a high probability of returning.
3 weeks ago Amelia had the regular surveillance ultrasound on her abdomen and pelvis.
RED FLAGS have been waved over the lesions on her liver (we have been keeping an eye on one and now another has started).
Blah Blah Blah Blah
Still waiting to hear.
Welcome to the life of a special needs parent.
If you can walk for 10 minutes, 30 minutes or 60 minutes for ALL cancer................
Please join our team.
Amelia is so incredibly proud to have her own team this year.
"Amelia's Fluffy Unicorns"
Could there be a better name ?!?!
As you could imagine, Tom is beside himself about asking his friends to join a team by this name!!!!!
SEPTEMBER 22 - 23 2018
4pm Saturday till 11am Sunday.
30 Mins will helps us greatly.
She has chosen the name and we all sincerely thank Emma for constantly confirming with Amelia.
Please join whether you can walk for 10 minutes or 4 hours.
ANY help is extremely appreciated.
We will continually walk from 4pm Saturday 22nd September till 11am Sunday 23rd September Sunday as a team.
Tom and Amelia are desperate to ask their friends to help them!
(please consider a unicorn anthem or costume when registering!)
BUT let me tell you all...
You have never seen anything like this.
cancer affects us all.
this organisation helps us all.
Please donate or join our very long walk below. 30 minutes would be awesome!
http://l.facebook.com/l.php?u=http%3A%2F%2Fccau.convio.net%2Fsite%2FTR%2FRelayforLife%2FCCVIC%3Fteam_id%3D60462%26pg%3Dteam%26fr_id%3D5396&h=ATObFOj5Z7EiI3scwQg1LebJQMy8ZhliufrDvA0Hl53Xxq0oUUmzUTX9Sm09Ninl-i4t1ULwOUTiw38X33YlEUP3k0gegkSeGnd3fNgTrNokA75pMiXn
xxx
Sunday 1 April 2018
ICAN walk
Hello and HAPPY EASTER 2018!!!!!!!
Thank you for your beautiful responses to Tom's 50km walk.
Reading all the messages, really made our hearts swell.
I was like an annoying leech throughout the whole experience.
I was there at the beginning and every single spot, until the end.
I drove past these amazing walkers, IN A CAR, and waited approximately 50 minutes each time, till they met me at the next destination.
EVERY stop!
(Tom's diabetes levels made me do it)
I chose to TOOT the horn a zillion times EVERYTIME I passed anyone with a white ICAN t-shirt, on my way to the next stop.
It made me feel better for driving the whole way!
At one point, I saw Tom look at me and roll his eyes, but I just tooted more!
At the halfway point, in front of many others, he came and kissed and hugged me.
"Thank you for helping me through this" he said in front of anyone listening.
I almost cried until I looked at all of the other adults around us.
Parents walking WITH their kids, parents providing snacks and lunch at ALL stops for ALL kids AND teachers WALKING to supervise everyone.
Adults everywhere supporting.
I was just supporting MY own and with HIS Type 1 Diabetes.
Who knows the reasons for other adults!
Absolutely mind blowing!
NO ONE could name a time that RCH had helped them or their family.
They were just doing it!
My family and I waited 60 minutes for Tom to come into distance at the end.
For Tom to begin the finish stretch.
4pm and we are waiting for a walk to finish that began at 7am.
None of us had a dry eye as he approached the finish line.
As I yelled at the people who stood in front of Amelia to MOVE!.....
We all screamed, clapped and blew whistles.
He had made it.
I think I had held my breathe the entire day.
I think I had been stressing about it since he signed up 6 weeks before!
Of all the 30 Primary School aged kids, no one had asked to go on the bus or get in a car, at any point.
It was amazing to witness.
I did not just cheer and congratulate Tom at the end....
I cheered and congratulated many children and adults.
It was a race I had no way of completing myself.
In the end they raised over $145,000 for a hospital that has saved our daughters life repeatedly and keeps her alive now.
THANK YOU EVERYONE xxx
Thank you for your beautiful responses to Tom's 50km walk.
Reading all the messages, really made our hearts swell.
I was like an annoying leech throughout the whole experience.
I was there at the beginning and every single spot, until the end.
I drove past these amazing walkers, IN A CAR, and waited approximately 50 minutes each time, till they met me at the next destination.
EVERY stop!
(Tom's diabetes levels made me do it)
I chose to TOOT the horn a zillion times EVERYTIME I passed anyone with a white ICAN t-shirt, on my way to the next stop.
It made me feel better for driving the whole way!
At one point, I saw Tom look at me and roll his eyes, but I just tooted more!
At the halfway point, in front of many others, he came and kissed and hugged me.
"Thank you for helping me through this" he said in front of anyone listening.
I almost cried until I looked at all of the other adults around us.
Parents walking WITH their kids, parents providing snacks and lunch at ALL stops for ALL kids AND teachers WALKING to supervise everyone.
Adults everywhere supporting.
I was just supporting MY own and with HIS Type 1 Diabetes.
Who knows the reasons for other adults!
Absolutely mind blowing!
NO ONE could name a time that RCH had helped them or their family.
They were just doing it!
My family and I waited 60 minutes for Tom to come into distance at the end.
For Tom to begin the finish stretch.
4pm and we are waiting for a walk to finish that began at 7am.
None of us had a dry eye as he approached the finish line.
As I yelled at the people who stood in front of Amelia to MOVE!.....
We all screamed, clapped and blew whistles.
He had made it.
I think I had held my breathe the entire day.
I think I had been stressing about it since he signed up 6 weeks before!
Of all the 30 Primary School aged kids, no one had asked to go on the bus or get in a car, at any point.
It was amazing to witness.
I did not just cheer and congratulate Tom at the end....
I cheered and congratulated many children and adults.
It was a race I had no way of completing myself.
In the end they raised over $145,000 for a hospital that has saved our daughters life repeatedly and keeps her alive now.
THANK YOU EVERYONE xxx
Wednesday 21 March 2018
Tommy OR Tom.
Hey Guys,
We have a very tired 11 year here at the moment.
He walked 20km's today in preparation for the 50km walk next week that he has signed up for.
It is to raise money for our local Royal Children's Hospital.
50 km + Type 1 Diabetic has meant a very stressed out ME for weeks now.
(How the hell is he going to do it as a Type 1?!)
During and after is going to be dangerous for Tom's levels.
It will more be after.
When he rests, his levels will plummet and no amount of apple juice or jelly beans will keep him safe!
One game of football (90 minutes) causes dangerous levels afterwards!
He is walking from Luna Park (St Kilda) to Frankston Pier....
IN ONE DAY.
"WHY IS EVERYONE SO NEGATIVE ABOUT ME DOING THIS?" he yelled at me last night.
I admit he has copped a lot of negativity from those close to him.
Those that are scared for him.
Those that are worried about his diabetes.
"I WANT TO DO THIS TO THANK RCH,
FOR SAVING AMELIA'S LIFE.
AND KEEPING HER ALIVE NOW.
WHY CAN'T YOU ALL UNDERSTAND THAT?!" he continued.....yelling.
I do understand that.
I just believe we may need to live in an Emergency Department for at least 12 hours afterwards!
When Tom stops moving his levels plummet quickly.
I am incredibly scared about when he sleeps that night.
I also understand that he loves his sister dearly and that we have taught him that diabetes should not ever stop him from anything.
(THIS may be taking that last comment a bit too far though! LOL!).
If you have $10 to spare please consider sending him a positive comment.
He obviously needs it right now.
(Due to our negativity and worry!).
Tom will always be his sister's advocate, beside Scott and I.
I am scared about next Thursday, BUT YET SO INCREDIBLY PROUD!
He just wants to do this for his sister.
Tom adores Amelia.
It is the only life he knows.
Loving, supporting and keeping his sister alive.
If you have some money to spare and a supportive message (that you may even have used for the Good Friday Appeal) please send it to Tommy, at
Thank you.
(I will be driving the whole walk and meeting Tom at every "stop". Any positive comments for me on the 4:30am wake up and staying awake through out the day would also be greatly be appreciated!!!!!!! LOL.)
Thursday 15 March 2018
Thank you!
Hello Dear Friends,
Thank you.
Thank you for sharing yours and our happiness about Ed Sheeran.
Your likes, loves and comments have been spoken about LOTS!
Thank you for sharing your love, enjoyment and pure excitement about Amelia meeting someone so famous!
But more importantly, someone Amelia REALLY wanted to meet.
We have in all honestly been in shock since Sunday night and in a daze!
Amelia is an AMAZING judge of character and realness.
After watching lots about Ed on YouTube and through other channels in the last 2 years, HE is the reason she finally decided to use her ONE wish in this lifetime of terminal illness.
She 100% knew he was what she wanted to use her wish on.
WHY?
To thank him.
To thank him for all that he does for others.
That is all.
That is all her wish was.
1 wish in life and that is it.
She just wanted to thank him.
Not about her.
One wish and she just wanted to thank him for all that he does for others.
(He does A LOT. Google It).
No interstate trip or Limousine service like other Make a Wish Kids.
Just look him in the eye and thank him for all that he does for others.
That is all Amelia asked.
We met him.
He was so normal.
Soooo incredibly normal (and yet so obviously busy).
But he made Amelia feel important and special and also Tom.
He spoke to all of us as a friend and answered everyone's questions.
But we did not ask for anything.
Just a photo.
Nothing to be signed.
(Unfortunately a fan page on Instagram has stolen our photos).
But we have a memory.
And Photos.
A memory of an everyday guy saying yes to meeting us.
A family battling to pay the bills and make an amazing life for 2 awesome kids with medical conditions.
Cannot improve on that too much more at 43 years of age (for me).
(We have increased our mortgage in $200,000 plus in the last 15 years because of nothing really.
Just surviving on Amelia's special needs, only really, and giving away Amanda's professional career and possible income.).
But you know what?
We will have No Regrets At The End.
We do not care.
This is our life and our situation.
Amanda and Scott made it their mission and will make it happen.
To create no regrets without begging people for help.
They gave birth to these children and we will do everything they can to help them.
It is their unknown fault due to genetics and they will strive to change or improve it.
What a lifetime achievement to add to Amelia's and Tom's list!
Many individuals striving to help them.
Amelia and Tom know they are so incredibly loved and how much we did not know.
An amazing life.
No matter how long.
xxx
Thank you.
Thank you for sharing yours and our happiness about Ed Sheeran.
Your likes, loves and comments have been spoken about LOTS!
Thank you for sharing your love, enjoyment and pure excitement about Amelia meeting someone so famous!
But more importantly, someone Amelia REALLY wanted to meet.
We have in all honestly been in shock since Sunday night and in a daze!
Amelia is an AMAZING judge of character and realness.
After watching lots about Ed on YouTube and through other channels in the last 2 years, HE is the reason she finally decided to use her ONE wish in this lifetime of terminal illness.
She 100% knew he was what she wanted to use her wish on.
WHY?
To thank him.
To thank him for all that he does for others.
That is all.
That is all her wish was.
1 wish in life and that is it.
She just wanted to thank him.
Not about her.
One wish and she just wanted to thank him for all that he does for others.
(He does A LOT. Google It).
No interstate trip or Limousine service like other Make a Wish Kids.
Just look him in the eye and thank him for all that he does for others.
That is all Amelia asked.
We met him.
He was so normal.
Soooo incredibly normal (and yet so obviously busy).
But he made Amelia feel important and special and also Tom.
He spoke to all of us as a friend and answered everyone's questions.
But we did not ask for anything.
Just a photo.
Nothing to be signed.
(Unfortunately a fan page on Instagram has stolen our photos).
But we have a memory.
And Photos.
A memory of an everyday guy saying yes to meeting us.
A family battling to pay the bills and make an amazing life for 2 awesome kids with medical conditions.
Cannot improve on that too much more at 43 years of age (for me).
(We have increased our mortgage in $200,000 plus in the last 15 years because of nothing really.
Just surviving on Amelia's special needs, only really, and giving away Amanda's professional career and possible income.).
But you know what?
We will have No Regrets At The End.
We do not care.
This is our life and our situation.
Amanda and Scott made it their mission and will make it happen.
To create no regrets without begging people for help.
They gave birth to these children and we will do everything they can to help them.
It is their unknown fault due to genetics and they will strive to change or improve it.
What a lifetime achievement to add to Amelia's and Tom's list!
Many individuals striving to help them.
Amelia and Tom know they are so incredibly loved and how much we did not know.
An amazing life.
No matter how long.
xxx
Tuesday 13 March 2018
Ed Sheeran Part 2
Hello Again!
Rewind to Sunday Night.....
I thought of four more discussions, that I forgot about, within the 6 minutes with ED!
1. My brother asked about his choice in Missy Higgins for one of his support acts.
"I have always loved her music and have listened to it for a long time. She is a great singer" he said.
2. Ed did not hesitate in putting on the Unicorn horn once we explained Amelia's love of Unicorns.
"Want a photo?!" he asked!
3. Amelia tried to speak to him of his own disabilities, mainly in the past.
He just smiled and nodded his head.
4. Amelia thanked him.
As clear as ever, she said "Thank you for all that you do for other people".
(Sooooooo Amelia. Thinking of everyone else all of the time).
I then helped her to explain about how he has housed children in Africa, visited children's hospitals and has met children like herself.
She has watched it all on the Internet".
(There IS ONE incredible photo of this meeting.....so innocent and relaxed that will be printed and framed forever.
I have tried for 1 hour now to share it, maybe I will succeed in the comments!)
Once Ed left the room, we all stood there in shock.
In total WTF! and OMG!
Everyone had the biggest smile.
We all stared at Amelia and she looked so happy and content.
Was she happy?
YES!
Ed's tour manager came in and asked to look at our concert tickets for the night.
"This is over the other side of the stadium. I am going to organise better for you" he said.
He then looked straight at Scott and said "I have a ticket for you too".
(Scott was never coming to the concert. I rang the manager directly once he contacted me about the meet and greet and asked if Scott could come to that part. Not the concert).
The manager had no plan except for the tickets, he had just been given, in his hand.
To leave the way we came, we would need to turn left outside of the meeting room.
Go back through all the secret entrances and hallways.
The manager stood outside the meeting room for 1 minute and said "Stuff it. Come this way".
We turned right.
We walked through doors and along a hallway.
We walked past at least 4 offices.
Each had at least 1 person in it and computer screens.
One had a sign saying something like "If you are not happy with your backstage pass, then Fuck Off!".
I loved it and wish I had of grabbed a photo, but the whole thing was so surreal!
Suddenly Ed walked past us with a guitar in his hand.
"Excuse me. Sorry guys" he said.
He joined 3 other men ahead of us and an impromptu meeting began.
One of the other people was Michael Gudinski.
They discussed a deal that had not been met by the other party.
My heart swelled that it involved donations to charities and how Ed was not happy the other people were not holding up their end of the deal.
We watched (while trying to look anywhere else but at them!) for 2 minutes until the manager lead us to our new seats.
The manager walked us up the same path that Ed enters to start the concert.
Beside the stage and out to the standing audience area.
He lead us to a wheelchair raised podium in the front standing area.
Amelia and one other could go on it.
We chose Tom to join Amelia.
I did not get the photo of Amelia and Tom that is now ingrained in my mind forever.
Tom was Amelia's plus one.
They were on that podium together with me closely behind.
Ed came out and Tom linked arms with Amelia and placed his head on her shoulder.
It was perfect.
SO incredibly perfect.
It sealed the whole night perfectly for me.
Thank you to everyone on this page, for sharing this amazing journey with us, and with Amelia.
As I have said previously, It does not matter how long you live....... it is about the quality, substance and love that you endure during this time.
During one lifetime.
Amelia has had SO much in her short life and has asked me to thank every single one of you.
She is still on cloud 9!
She met "My Ed".
xxx
P.S
A Journalist has contacted me over the weekend about us.
I am extremely honoured and yet hesitant in responding.
I have my protective little village now and we all feel safe and cocooned in giving Amelia the most amazing life possible.
Tommy's upbringing is also protected and helped by those that are close.
Do we need more media and coverage of our plight?
What is our plight and do we create or help an important issue in disability now?
I just don't know.
Just feel so safe and happy right now and do not want to destroy this incredibly funny, sarcastic and loved home with humorous politics and simple campaigning.
Amelia's wish came true on the weekend though.
She met Ed Sheeran.
Cannot get any better than that!
Thank you to all that helped.
xxx
Rewind to Sunday Night.....
I thought of four more discussions, that I forgot about, within the 6 minutes with ED!
1. My brother asked about his choice in Missy Higgins for one of his support acts.
"I have always loved her music and have listened to it for a long time. She is a great singer" he said.
2. Ed did not hesitate in putting on the Unicorn horn once we explained Amelia's love of Unicorns.
"Want a photo?!" he asked!
3. Amelia tried to speak to him of his own disabilities, mainly in the past.
He just smiled and nodded his head.
4. Amelia thanked him.
As clear as ever, she said "Thank you for all that you do for other people".
(Sooooooo Amelia. Thinking of everyone else all of the time).
I then helped her to explain about how he has housed children in Africa, visited children's hospitals and has met children like herself.
She has watched it all on the Internet".
(There IS ONE incredible photo of this meeting.....so innocent and relaxed that will be printed and framed forever.
I have tried for 1 hour now to share it, maybe I will succeed in the comments!)
Once Ed left the room, we all stood there in shock.
In total WTF! and OMG!
Everyone had the biggest smile.
We all stared at Amelia and she looked so happy and content.
Was she happy?
YES!
Ed's tour manager came in and asked to look at our concert tickets for the night.
"This is over the other side of the stadium. I am going to organise better for you" he said.
He then looked straight at Scott and said "I have a ticket for you too".
(Scott was never coming to the concert. I rang the manager directly once he contacted me about the meet and greet and asked if Scott could come to that part. Not the concert).
The manager had no plan except for the tickets, he had just been given, in his hand.
To leave the way we came, we would need to turn left outside of the meeting room.
Go back through all the secret entrances and hallways.
The manager stood outside the meeting room for 1 minute and said "Stuff it. Come this way".
We turned right.
We walked through doors and along a hallway.
We walked past at least 4 offices.
Each had at least 1 person in it and computer screens.
One had a sign saying something like "If you are not happy with your backstage pass, then Fuck Off!".
I loved it and wish I had of grabbed a photo, but the whole thing was so surreal!
Suddenly Ed walked past us with a guitar in his hand.
"Excuse me. Sorry guys" he said.
He joined 3 other men ahead of us and an impromptu meeting began.
One of the other people was Michael Gudinski.
They discussed a deal that had not been met by the other party.
My heart swelled that it involved donations to charities and how Ed was not happy the other people were not holding up their end of the deal.
We watched (while trying to look anywhere else but at them!) for 2 minutes until the manager lead us to our new seats.
The manager walked us up the same path that Ed enters to start the concert.
Beside the stage and out to the standing audience area.
He lead us to a wheelchair raised podium in the front standing area.
Amelia and one other could go on it.
We chose Tom to join Amelia.
I did not get the photo of Amelia and Tom that is now ingrained in my mind forever.
Tom was Amelia's plus one.
They were on that podium together with me closely behind.
Ed came out and Tom linked arms with Amelia and placed his head on her shoulder.
It was perfect.
SO incredibly perfect.
It sealed the whole night perfectly for me.
Thank you to everyone on this page, for sharing this amazing journey with us, and with Amelia.
As I have said previously, It does not matter how long you live....... it is about the quality, substance and love that you endure during this time.
During one lifetime.
Amelia has had SO much in her short life and has asked me to thank every single one of you.
She is still on cloud 9!
She met "My Ed".
xxx
P.S
A Journalist has contacted me over the weekend about us.
I am extremely honoured and yet hesitant in responding.
I have my protective little village now and we all feel safe and cocooned in giving Amelia the most amazing life possible.
Tommy's upbringing is also protected and helped by those that are close.
Do we need more media and coverage of our plight?
What is our plight and do we create or help an important issue in disability now?
I just don't know.
Just feel so safe and happy right now and do not want to destroy this incredibly funny, sarcastic and loved home with humorous politics and simple campaigning.
Amelia's wish came true on the weekend though.
She met Ed Sheeran.
Cannot get any better than that!
Thank you to all that helped.
xxx
Monday 12 March 2018
Ed Sheeran Part 1
HELLO!!!!!!!!!
(I am yelling with excitement BECAUSE WE MET ED SHEERAN!!!!)
Amelia's preparation for the meeting was extremely thorough and every single detail thought about carefully.
Every single item in the hamper had a strong sentimental meaning behind it.
Cat toy and bow tie for his well loved cats.
Maltesers from car karaoke with some famous TV host.
A cat/unicorn pen (cat-Ed unicorn-Amelia)
A Unicorn horn! (No question! Totally Amelia!)
etc
If I was to ever formally be called her slave, it would be the last 48 hours, with the amount she wanted to do to prepare!!!!
Hamper items- check
Hair cut- check
New Dress- check
As we wheeled Amelia out to the car, I had to take a massive breath.
Amelia looked stunning and SO much older!
We arrived at the venue 1 hour earlier than the meeting time.
As many of you know, I am late for EVERYTHING and this was NOT going to be the time to be late!!!!
Finding the meeting point was extremely difficult and after I eventually contacted the manager, he gave us another location that was just as confusing.
When we eventually found him, I was a stressed out mess.
We waited for him the manager to finish his cigarette (hilarious!) and then we began "the long walk".
(Throughout this Amelia was beautifully calm).
The next part was fun!
We felt like we were at Hogwarts (Harry Potter) being led through all the dungeons and hallways to the secret meeting place.
We went through carparks, service entries and basement hallways to eventually be led into a small room.
Phone calls were being made by management and security were quietly chatting.
A conversation about what it is like to work with Ed and how hard it is on family and friends was occurring.
My head was turned to the left as I spoke to Amelia and Tom.
I turn my head to the right and LOOK STRAIGHT AT HIM standing next to me.
ED!!!
INSERT Amanda and how she would respond......
Have a guess?!
Lets discuss my embarrassing moment, shall we....
Ed is exactly the same height as me and his glasses make his eyes look very big.
He is staring at me with that smile everyone sees in the media.
I throw my head back and yell "OH WOW! UMMM HI".
Yep!
Welcome!
He laughed and hugged and kissed me on the cheek!
He hugged Amelia and shook hands with Tom, Scott and my brother Stuart.
He picked up THE hamper and asked Amelia "What's this?".
Amelia spoke beautifully (hard with A-T) and explained a few items.
There were a few "OMG" and "OH WOW" from Ed.
He was obviously very touched by at least 2 items.
He asked Amelia if it was her first concert and we helped her to explain Bruno Mars on Wednesday night. He asked about Rod Laver Arena and if the concert was good........
INSERT second foot in mouth moment for Amanda......
Because I talk before I think, I chose to speak about how I could not see BRUNO dancing due to all the pyrotechnics! And that concerts are so loud now.
(SHUT THE FUCK UP AMANDA!)
Thankfully I realised I was stuffing up again and reminded Amelia that she had a question...
"Did you really break your leg when you were 6 years old" she asked.
"No" he answered.
"My older brother did, but it sounded better if I said I did in the song".
I reminded Tom that he had a question.
Tom asked "How did you get people to listen and follow you initially?'
"The right people listened to me early on, but did not like me" he said.
"But I just kept trying and kept pushing, never giving up.
I could decide to be an astronaut tomorrow and I promise you, that in 20 years time, I will be in space.
Hard work ALWAYS pays off. Try and you WILL succeed".
Best piece of advice for Tom.
After Tom's comments last week, I was determined to have a major focus on Tom AS WELL as Amelia.
Tom gave a Melbourne Demons Football Club Football donated by the club proudly.
Ed happily agreed to a photo with Tom and the footy.
He then questioned the successful teams, and suggested Hawthorn, after their win when he was pre entertainment at the Grand Final a few years ago.
My brother showed his Richmond Tigers Tattoo up his entire forearm and he and Scott explained the Grand Final of last year.
Tom said "Our team are up and coming! We are the future!"
Then it ended.
Scott ended with the perfect comment....
"Amelia watches all of your media coverage and enjoys all of your songs in her chair.
Her one wish in this whole wide world was to meet you.
Thank you SO much for making her wish come true.
She calls you MY ED".
He hugged Amelia and I.
Verbally said goodbye to Tom, Scott and Stuart.
After about 6 minutes.
He was gone.
6 MINUTES!
But the whole experience was like the car crash we had years ago.
The whole world slowed and everything was in slow motion.
We all absorbed and watched every single thing......
But then afterwards we all asked each other
"What the hell just happened?!
But then the whirlwind continued.
I will write more tomorrow.
This chicken is exhausted xxx
(I am yelling with excitement BECAUSE WE MET ED SHEERAN!!!!)
Amelia's preparation for the meeting was extremely thorough and every single detail thought about carefully.
Every single item in the hamper had a strong sentimental meaning behind it.
Cat toy and bow tie for his well loved cats.
Maltesers from car karaoke with some famous TV host.
A cat/unicorn pen (cat-Ed unicorn-Amelia)
A Unicorn horn! (No question! Totally Amelia!)
etc
If I was to ever formally be called her slave, it would be the last 48 hours, with the amount she wanted to do to prepare!!!!
Hamper items- check
Hair cut- check
New Dress- check
As we wheeled Amelia out to the car, I had to take a massive breath.
Amelia looked stunning and SO much older!
We arrived at the venue 1 hour earlier than the meeting time.
As many of you know, I am late for EVERYTHING and this was NOT going to be the time to be late!!!!
Finding the meeting point was extremely difficult and after I eventually contacted the manager, he gave us another location that was just as confusing.
When we eventually found him, I was a stressed out mess.
We waited for him the manager to finish his cigarette (hilarious!) and then we began "the long walk".
(Throughout this Amelia was beautifully calm).
The next part was fun!
We felt like we were at Hogwarts (Harry Potter) being led through all the dungeons and hallways to the secret meeting place.
We went through carparks, service entries and basement hallways to eventually be led into a small room.
Phone calls were being made by management and security were quietly chatting.
A conversation about what it is like to work with Ed and how hard it is on family and friends was occurring.
My head was turned to the left as I spoke to Amelia and Tom.
I turn my head to the right and LOOK STRAIGHT AT HIM standing next to me.
ED!!!
INSERT Amanda and how she would respond......
Have a guess?!
Lets discuss my embarrassing moment, shall we....
Ed is exactly the same height as me and his glasses make his eyes look very big.
He is staring at me with that smile everyone sees in the media.
I throw my head back and yell "OH WOW! UMMM HI".
Yep!
Welcome!
He laughed and hugged and kissed me on the cheek!
He hugged Amelia and shook hands with Tom, Scott and my brother Stuart.
He picked up THE hamper and asked Amelia "What's this?".
Amelia spoke beautifully (hard with A-T) and explained a few items.
There were a few "OMG" and "OH WOW" from Ed.
He was obviously very touched by at least 2 items.
He asked Amelia if it was her first concert and we helped her to explain Bruno Mars on Wednesday night. He asked about Rod Laver Arena and if the concert was good........
INSERT second foot in mouth moment for Amanda......
Because I talk before I think, I chose to speak about how I could not see BRUNO dancing due to all the pyrotechnics! And that concerts are so loud now.
(SHUT THE FUCK UP AMANDA!)
Thankfully I realised I was stuffing up again and reminded Amelia that she had a question...
"Did you really break your leg when you were 6 years old" she asked.
"No" he answered.
"My older brother did, but it sounded better if I said I did in the song".
I reminded Tom that he had a question.
Tom asked "How did you get people to listen and follow you initially?'
"The right people listened to me early on, but did not like me" he said.
"But I just kept trying and kept pushing, never giving up.
I could decide to be an astronaut tomorrow and I promise you, that in 20 years time, I will be in space.
Hard work ALWAYS pays off. Try and you WILL succeed".
Best piece of advice for Tom.
After Tom's comments last week, I was determined to have a major focus on Tom AS WELL as Amelia.
Tom gave a Melbourne Demons Football Club Football donated by the club proudly.
Ed happily agreed to a photo with Tom and the footy.
He then questioned the successful teams, and suggested Hawthorn, after their win when he was pre entertainment at the Grand Final a few years ago.
My brother showed his Richmond Tigers Tattoo up his entire forearm and he and Scott explained the Grand Final of last year.
Tom said "Our team are up and coming! We are the future!"
Then it ended.
Scott ended with the perfect comment....
"Amelia watches all of your media coverage and enjoys all of your songs in her chair.
Her one wish in this whole wide world was to meet you.
Thank you SO much for making her wish come true.
She calls you MY ED".
He hugged Amelia and I.
Verbally said goodbye to Tom, Scott and Stuart.
After about 6 minutes.
He was gone.
6 MINUTES!
But the whole experience was like the car crash we had years ago.
The whole world slowed and everything was in slow motion.
We all absorbed and watched every single thing......
But then afterwards we all asked each other
"What the hell just happened?!
But then the whirlwind continued.
I will write more tomorrow.
This chicken is exhausted xxx
Saturday 10 March 2018
1 sleep to go
Hello friends,
Tomorrow is D day.....
OR Ed day!!!!!!!!
As I have said on many occasions, I am not equipped to deal with this kid!
It is like she is from another universe sometimes because she can speak the most profound words that it makes you stop and ask why?!
How did you think to say that?!?!
Why are you saying something so profound and mature when you are so young?
Why are you saying something so inspiring and personally directed at someone, when you are sooooo young?!?!
I have a million faults and regularly question why she has been given to me, BUT I also know it is for a reason.
I am dedicating my whole life to her (and Tom) for a reason.
To create the most amazing life that I can possibly give them BOTH.
SHE has a short amount of time with us and it needs to be AMAZING.
HE needs to be not damaged and also live an amazing life.
But HE needs to also develop into an amazing adult.
I am not religious, but that is my purpose.
I am currently undergoing numerous tests for a possible neurological disease for pain and tingling in my body, BUT I know that no matter what, Amelia and Tom will always be the purpose in my life.
Putting all of that crap aside, Amelia looked at me tonight and quietly said...
"I just want to thank him".
"What for?" I asked her.
"For all the nice things he does for other people" she answered.
My sweet, sweet child.
1 more sleep and she will get to tell Ed Sheeran "thank you".
xxx
Tomorrow is D day.....
OR Ed day!!!!!!!!
As I have said on many occasions, I am not equipped to deal with this kid!
It is like she is from another universe sometimes because she can speak the most profound words that it makes you stop and ask why?!
How did you think to say that?!?!
Why are you saying something so profound and mature when you are so young?
Why are you saying something so inspiring and personally directed at someone, when you are sooooo young?!?!
I have a million faults and regularly question why she has been given to me, BUT I also know it is for a reason.
I am dedicating my whole life to her (and Tom) for a reason.
To create the most amazing life that I can possibly give them BOTH.
SHE has a short amount of time with us and it needs to be AMAZING.
HE needs to be not damaged and also live an amazing life.
But HE needs to also develop into an amazing adult.
I am not religious, but that is my purpose.
I am currently undergoing numerous tests for a possible neurological disease for pain and tingling in my body, BUT I know that no matter what, Amelia and Tom will always be the purpose in my life.
Putting all of that crap aside, Amelia looked at me tonight and quietly said...
"I just want to thank him".
"What for?" I asked her.
"For all the nice things he does for other people" she answered.
My sweet, sweet child.
1 more sleep and she will get to tell Ed Sheeran "thank you".
xxx
Thursday 8 March 2018
Post BRUNO Pre ED
Excitement overload here yesterday, last night and today.
Now the countdown is on for Sunday!!!!!
Bruno Mars concert last night was AMAZING!
Sunday with Ed Sheeran will be even better.
Once again I am witnessing the power of human nature and it's pure honesty......
"How the fuck are you getting to meet Ed?"
"Why are you getting to meet him?"
"Gee, you must have good contacts".
I have visably watched people sigh and say "you got another thing?! Really?!".
It is probably better to start with
"Congratulations! I am so happy for Amelia!"
Call me old fashioned, but that is what I think.
I am not analysing situations like this anymore.
I am beyond people like this bringing me down.
Thank you to those that are enjoying this journey and difficult road we are on.
Thank you to those that are feeling the excitement and happiness within as we try to share everything as best as we can.
Sunday will be all about Amelia and Tom.
Amelia and Tom WILL BE MEETING ED SHEERAN!!!
I overheard Tom telling a friend "I won't get to talk to him. It is all about Amelia".
Most of you will know my internal response to this.
It begins with a Melbourne Demons Football to give to him, from Tom.
Now to enjoy the next few days and build up in excitement to such a monumental event.
I know one amazing little girl who cannot wait.
xxx
Post Note.........
(Amanda has already agreed that she will be tied up, in a corner and have gaffa tape across her mouth during the "meet and greet". This is only due to her verbal diarrhoea issue when she is nervous).
Sunday 4 March 2018
Ed Sheeran Part 1
Hello friends,
Today's post is at the opposite end of the spectrum to the previous post!
Both are true, honest and real though.........
BUT this one IS GOOD!
SOOOOO GOOD!!!!!!
Halfway through last year Amelia suddenly asked to "use" her Make a Wish.
She had known that it was just sitting and waiting for her, for when she was ready.
7 years ago......she knew she could use it, when she was ready.
(we all knew she was terminal, but she did not originally)
People were starting to pressure her to use it due to the increased deterioration of her body, but we reassured her to use it at exactly the perfect time for her.
Something that was actually in HER control!
"IF Ed Sheeran or Bruno Mars ever come out in concert, I want to go. I want it to be my first concert ever" she said.
Both announce concerts, within days of each other, for the following year.
We could not choose so we tried for both.
We would never have succeeded in getting tickets if it was not due to an amazing friend called "Kate" for Bruno and my brother, Stuart, for Ed.
Both took hours upon hours of calls and stupid hold music.
AND Birthday and Christmas presents from Poppy!
Anything for Amelia though!
(No regrets at the end!)
Bruno took 2 hours to get tickets, Ed took 4.5 hours (and a broken call button for my brother on his mobile phone!).
After all of that....
"I want to use my wish" Amelia suddenly says.
"Ok. What for?" I ask.
"I want to meet Ed Sheeran".
MASSIVE.
She wants to finally make a decision and use her wish.
We apply online and 2 amazing volunteers come to our house at night time.
They want a variety of wish options.
I am like "NO" she wants THIS ONE only!!!!!
BUT it does not work like that.
You have to put in 3,
because sometimes they are not possible to achieve.
BUT she ONLY wants to use her wish to meet Ed, I explain.
Stiff shit, I am told nicely.
Sometimes they are declined.
The Ed Sheeran wish WAS declined from someone's end and she then felt "no wish then please".
She no longer wanted to use her Make a Wish.
(Make a Wish tried their best)
Make a Wish then moved onto her other choices, which were not as great (to her).
It took her 6 months to choose a new wish.
(we called them back to change the 3 wishes after 6 months).
She ended up making an awesome choice for her wish and it will hopefully occur later this year.
But Ed was always the original idea.
We were still going to the concert/s OBVIOUSLY of Bruno and Ed.
The whole immediate family to Bruno (first concert ever for both kids!).
My brother (a massive Ed fan) to the second one, with me and the kids (no Scott).
All in the matter 0f 5 days!!!!!
REWIND........
Last week, I received an email from Frontier Touring offering "a meet and greet competition".
It required a 25 word response to WHY you should win and a share on FB.
My 25 words was to the number exactly and explained
"My daughter, Amelia, loves Ed Sheeran SO much that she wanted to use her “Make a Wish” to meet him. But it was declined
".I shared it.
Friends started sharing it.
I shared it on Amelia's Project page....
BUT I applied to the competition they were offering with a 25 words thingo and shared on my personal Facebook page casually.
I DID NOT THINK ANYTHING WOULD COME OF IT!
Friends and associates began sharing and writing their own comments and #tags.
I shared on Amelia's Project Page (which I feel beyond gratitude for people sharing as well!) and the things started happening 100+.
I never expected anything to happen from it.
Jessica messaged me wanting an email address for Ed's manager.
WHO is Jessica?
Apparently she is a long distant relative on Amelia's Project page.
(I have since learnt her close connection and how amazing she is).
Meredith messaged me wanting approval to pass on details of mobile and email address to 3AW and Neil Mitchell.
(everyone knows how awesome Meredith is!)
Then Jessica messaged me while I was cooking dinner.
"Ed's tour manager has emailed you".
I open the email and fall to my hands on my knees.
I start reminding myself to BREATHE.
It said
"With regards to meeting Ed, it will happen at 5:30pm on March 11th".
There was LOTS of other stuff in the email, BUT this is what I almost collapsed over!
I ran into the living room and announced to Scott and Amelia "OMG! We are meeting Ed Sheeran".
(sounds so monotone in writing, but it was dramatic and LOUD! VERY Loud!).
I ran down the back to Tom and announced the same thing!
Everyone went into shock while Amelia posted it to FB.
People start texting my phone "UMMM is she serious?!"
I was the crazy person running around the house screaming OMG, OMG, OMG!!!!!!
I ran across the road to tell our neighbours and get called in to witness their gorgeous 3rd child walking for the first time..............TOO MUCH!!!!!
(Unfortunately I kept dinner cooking and totally burnt it!).
The next morning sweet, quiet Amelia got up and sat in her chair...
"Mum... Am I really meeting Ed Sheeran?" she asked quietly.
I went up and held her hand and said "Yes! Yes you are".
She quietly had happy tears while listening to the song below.
Sometimes it takes a village to raise a child.
THIS village is helping me to have no regrets at the end.
https://youtu.be/2Vv-BfVoq4g?list=RD2Vv-BfVoq4g
And in everyway she is totally perfect to us.
Thank you Village.
I will have No Regrets At The End with all of you helping me along the way.
(I will try photo's, video and LIVE on the night).
xxx
Monday 26 February 2018
Dear Amelia and Tom
Dear Amelia and Tom,
I am sorry.
I am so incredibly sorry.
Amelia you are 14 and Tom you are 11.
Both of you are dealing with conditions that are genetic and created by your daddy and I.
You are dealing with everything different in your lives because of your daddy and I.
Our genes created both of you and all of your differences and difficulties.
We did not know though.
I so, so promise, with all my heart we did not know.
Tom, you have to deal with such limited sugar and carbohydrate intake.
Measured food and limited choices for you, my amazing boy.
You are woken up at all hours of the night and are forced to eat and drink while half asleep to get your BSL to a safe level.
Discussions 4 times a day (including daily calls from school) about insulin doses based on exercise etc.
Amelia's A-T gene disposition could have been compared to a whole MCG full of people..... and just your daddy and I had the A-T gene.
We were soul mates when we met and made you.
A beautiful, teenage loved up couple.
One in 4 chance of creating an A-T child.......
and we did it.
YAY! us.......
NOT.
We lost your mobility slowly, after creating it.
We are losing your speech, after creating it.
We are losing your brain after creating it.
Now Amelia's lungs are failing her slowly.....thanks to our genes.
We always new it was terminal, BUT this is scary.
Lungs = breathing = staying alive.
I do not know what happens next.
I am so, so, so sorry.
We just did not know.
Creating people so inspiring and amazing and yet making them suffer everyday due to genetic disposition.....
We are just so sorry.
We just did not know.
But...................................
IF we did know and IF we did know the typed facts........
We would have possibly stopped the birth.
You would never have been here.
I would have looked at me personally and thought that I was not the type of person to mother such children.
(I honestly say this sobbing while trying to find the keys on the keyboard)
BUT then I would never have been introduced to this kind of life.
A life of finding positives and happiness around every corner.
Thank you Amelia and Tom for showing us where to look for inspiration.
We know now to just look at both of you for courage in moving forward.
Our future may be scary, but you both seem to be leading the way.......
While daddy and I follow the path.
xxx
I am sorry.
I am so incredibly sorry.
Amelia you are 14 and Tom you are 11.
Both of you are dealing with conditions that are genetic and created by your daddy and I.
You are dealing with everything different in your lives because of your daddy and I.
Our genes created both of you and all of your differences and difficulties.
We did not know though.
I so, so promise, with all my heart we did not know.
Tom, you have to deal with such limited sugar and carbohydrate intake.
Measured food and limited choices for you, my amazing boy.
You are woken up at all hours of the night and are forced to eat and drink while half asleep to get your BSL to a safe level.
Discussions 4 times a day (including daily calls from school) about insulin doses based on exercise etc.
Amelia's A-T gene disposition could have been compared to a whole MCG full of people..... and just your daddy and I had the A-T gene.
We were soul mates when we met and made you.
A beautiful, teenage loved up couple.
One in 4 chance of creating an A-T child.......
and we did it.
YAY! us.......
NOT.
We lost your mobility slowly, after creating it.
We are losing your speech, after creating it.
We are losing your brain after creating it.
Now Amelia's lungs are failing her slowly.....thanks to our genes.
We always new it was terminal, BUT this is scary.
Lungs = breathing = staying alive.
I do not know what happens next.
I am so, so, so sorry.
We just did not know.
Creating people so inspiring and amazing and yet making them suffer everyday due to genetic disposition.....
We are just so sorry.
We just did not know.
But...................................
IF we did know and IF we did know the typed facts........
We would have possibly stopped the birth.
You would never have been here.
I would have looked at me personally and thought that I was not the type of person to mother such children.
(I honestly say this sobbing while trying to find the keys on the keyboard)
BUT then I would never have been introduced to this kind of life.
A life of finding positives and happiness around every corner.
Thank you Amelia and Tom for showing us where to look for inspiration.
We know now to just look at both of you for courage in moving forward.
Our future may be scary, but you both seem to be leading the way.......
While daddy and I follow the path.
xxx
Friday 23 February 2018
February 23/2/18
Hello!
Lots of changes here!
We have carers regularly arriving, for Amelia, and no one knowing in the family what to do while they are here!
It is REALLY weird.
People come into your house and try to do the job that you have always done.... BUT first they need to learn it!
They AND you are nervous!
It will take a loooooooong time to adjust!
While the new carers are here, family members disappear to read, watch you tube or hide in a corner sleeping.....or hide.
I cannot find them, so I do not know!
I have to stay nearby and regulate myself on interrupting and helping Amelia explain things.
But after almost 2 weeks, it is slowly becoming a good decision.
(A decision forced upon me by therapists).
Amelia adores them and enjoys new ones arriving.
We will have 4/5 carers allocated to Amelia (for continuity and bonding) allowing for sick days and holidays.
I understand we need extra help with the 24/7 and Amelia needs the extra companionship and friendship.
She is seriously loving the extra attention.
I also need the help with Tom in school pick up and drop off as Amelia's school bus occurs at exactly the same time every day.
I cannot do both at once.
As we all struggle with the almost daily carer visits, Amelia loves it.....
At one stage I came in to her feet on our coffee table being painted with nail polish!
Amelia has become even more outspoken recently and is displaying even more "quick wit".
As always, introducing "new" people to her is a laugh.
"Did she just say that?" they say.
YES! we answer.
Yes she did.
Get used to it.
She is clever, witty and hilarious.
She is also very immature, squeals inappropriately and thinks penis's are hilarious.
God Help Me (on the last one!)
We have worked with her over the last 12 months to accept carers (strangers) coming to shower her.
For a 14 year old girl that is HUGE.
Naked, scars ..........and so incredibly self conscious.
We are so incredibly proud of her smiling, talking and laughing throughout the whole process.
Personally, I would have struggled......
We are currently working through a major hurdle in disability in our family.....
But the main person in the battle of acceptance, Amelia, has been amazing.
Amelia is our leader on this.
We can walk away, leave the house or choose not to speak.
Amelia does not have that option.
Carers need to work directly with her.
Amelia is showing AMAZING resilience talking and accepting others, while we try to work out hours and days for assistance.
I need to see 190% knowledge, understanding, acceptance and proof that you can care for my child safely.
One mistake and we may be in "danger zone".
A massive leaning curve for all of us.
xxx
Lots of changes here!
We have carers regularly arriving, for Amelia, and no one knowing in the family what to do while they are here!
It is REALLY weird.
People come into your house and try to do the job that you have always done.... BUT first they need to learn it!
They AND you are nervous!
It will take a loooooooong time to adjust!
While the new carers are here, family members disappear to read, watch you tube or hide in a corner sleeping.....or hide.
I cannot find them, so I do not know!
I have to stay nearby and regulate myself on interrupting and helping Amelia explain things.
But after almost 2 weeks, it is slowly becoming a good decision.
(A decision forced upon me by therapists).
Amelia adores them and enjoys new ones arriving.
We will have 4/5 carers allocated to Amelia (for continuity and bonding) allowing for sick days and holidays.
I understand we need extra help with the 24/7 and Amelia needs the extra companionship and friendship.
She is seriously loving the extra attention.
I also need the help with Tom in school pick up and drop off as Amelia's school bus occurs at exactly the same time every day.
I cannot do both at once.
As we all struggle with the almost daily carer visits, Amelia loves it.....
At one stage I came in to her feet on our coffee table being painted with nail polish!
Amelia has become even more outspoken recently and is displaying even more "quick wit".
As always, introducing "new" people to her is a laugh.
"Did she just say that?" they say.
YES! we answer.
Yes she did.
Get used to it.
She is clever, witty and hilarious.
She is also very immature, squeals inappropriately and thinks penis's are hilarious.
God Help Me (on the last one!)
We have worked with her over the last 12 months to accept carers (strangers) coming to shower her.
For a 14 year old girl that is HUGE.
Naked, scars ..........and so incredibly self conscious.
We are so incredibly proud of her smiling, talking and laughing throughout the whole process.
Personally, I would have struggled......
We are currently working through a major hurdle in disability in our family.....
But the main person in the battle of acceptance, Amelia, has been amazing.
Amelia is our leader on this.
We can walk away, leave the house or choose not to speak.
Amelia does not have that option.
Carers need to work directly with her.
Amelia is showing AMAZING resilience talking and accepting others, while we try to work out hours and days for assistance.
I need to see 190% knowledge, understanding, acceptance and proof that you can care for my child safely.
One mistake and we may be in "danger zone".
A massive leaning curve for all of us.
xxx
Tuesday 13 February 2018
New Lifestyle
Hello Friends,
(Please read the 2 blogs below before this one!)
This week our very first carers arrived!
We were all excited, petrified and realised it will take time to get used to.
Tom said "I probably shouldn't do play station while they are here".
"Nooooooo" I said.
"We all need to act and live normal!".
We have all discussed the new energy and ideas that will start coming regularly
(in the form of people!).
BUT how we are also all ingrained in routine and quiet time.
We have become such hermits and it is strange to have people coming and going regularly.
Hopefully they will inject another element of "fun" into Amelia's life.
She is truly ready for it and has already embraced it readily.
The rest of us need to just get used to it.
_____________________________________
In this whole process of understanding and accepting help from the outside, I have personally struggled , sometimes despite my online positive comments!
For 6 months, I have been preparing Amelia, while probably preparing myself more.
I know it is not admitting defeat, but that is how I have been honestly feeling.
Admitting that, even though I am a full time carer........... "I need help",
Even though "I am her mother and she is my responsibility".............. I need help.
Letting someone else have experiences with Amelia, regularly, that I should be having with her....
But this is part of the possibly "unhealthy" closeness Amelia and I have now.
We need time with others and apart now.
My body, my mind, Tom and Scott, need me to dedicate time to them too now.
In my process to find people to help us, I hurt someone special, dearly.....and her family.
I had a meltdown and struggled with it all recently.
I was cruel and unkind to someone.
I will be forever upset with myself for losing this person as a carer (and Scott and Amelia will never let me forget, because they thought she was awesome).
Another strike, cross and mark against my name.
Special needs and fear has changed me forever.
Sometimes I truly despise the person I have become.
Sorry.
That is very blunt........
BUT when you are handed a life of confusion, it is very difficult to know how to handle, confront and solve it....and situations that arise.
Especially in a situation like ours.
I will forever sincerely apologise to this family for my wrong choice of comment and behaviour.
______________________________________
Tom has decided to sign up for the ican challenge at his school.
When you learn about what that is, you will understand about why I may have hyperventilated momentarily.
In 7 weeks time, Tom (or Tommy for anyone around him)
will partake in a Royal Children's Hospital fundraising walk FROM Frankston Pier TO St Kilda.
50 kms.
50 F'N Kms !!!!!
BREATHE. BREATHE.
Type 1 Diabetics will understand my heart attack, fainting spell and loss of breath.
Serious Hypo Situation.
(Dropping too low into an unconscious state after the event).
BUT, BUT, BUT,
If anyone is going to look after himself and follow the rules.........
Actually NO!
Type 1 Diabetes is soooooo unpredictable, it is going to be a rollercoaster!!!!
If anyone is going to prove that diabetes cannot stop him though,
it will definitely be Tom ......
sorry Tommy.
TOM FOR GOLD!!!!!!
Or just completing the 50 km's and not ending up in hospital, would be good!
(disclosure - mum- Amanda will spend the next few weeks in contact with RCH to ensure diabetic child has a reasonable plan in place!)
(that will not work of course- type 1 does what it wants!)
(A plan that has insulin, sugar and carbs ready for a 50km walk - it will be totally inaccurate and mum will administer appropriate crap).
Tommy's mum will have anything and everything possibly needed.
Because she will drive the whole f'n thing !
_________________________________________________
Rewinding back to my early years, when I met Scott (1990 - 15 years old), I also met his 2 best friends.
Both friends had the most amazing mum's ever.
One mum of one of the boys had the most laid back golden retriever you have ever met.
This guy was one of the people that let me intrude the small "best friend" group they had created.
Actually, I think he hated me for a long time (but don't tell him I said that!).
We were only 15 years old!
He slowly let me get to know him while I got to know "his life".
For all the single mums out there, this guys mum was amazing.
She struggled and fed and clothed him on her own.
She housed him, while trying to live a life of her own also.
She was welcoming and amazing.
In the last 2 decades we all grew apart sadly.
Last week the stars aligned to remind him that "this group of friends" would always be there for each other.
The messages started last week about this amazing mothers ill health.
Last weekend she passed away.
I feel like this extraordinary strength of my youth and a role model to women in general has passed.
I feel this extraordinary man, that has followed and private messaged us on numerous Amelia's project blogs, has developed perfectly by the love of his mother.
Sometimes there are friends that will be friends forever, no matter the past.
Continue being the amazing person you have become.
See you at the funeral xxx
________________________________________
My Kitchen table is currently covered in a massive amount of paperwork and has a laptop in the middle of it all.
This NDIS plan is going to be very thorough and detailed!!!!
They want independence and quality of life for Amelia?
I am offering loads of opportunities for her to have it.
She has gone without equipment etc because of cost and timespan to receive and all of that is about to change. I am determined to research, learn and apply for everything she honestly deserves in the next few weeks under the new NDIS plan
________________________________________
Finally.....
Last night Amelia had her nails done by the carers that came.
They started the process of a Communication Wall that I had prepared that shows Amelia what is happening and when. It includes a section for her to write what she would like to do and try in the future with these people.
I was able to cook tea and spend time with Tom.
Tonight I was able to watch Tom's footy training on the beach and socialise with parents (I am always isolated with Amelia because we can't get her on the sand).
I cant leave him and take her for a walk in situations like beach footy, because of his Type 1, and the exercise could cause him to hypo.
But tonight a carer took her for a nature walk around the area and bought her an ice-cream. She had an AMAZING time. They apparently laughed, giggled and accidently got themselves soaked by a faulty drink tap!
I was given the chance to talk to adults.
Many that have been around Tom's footy team for 3+ years.
I have never been able to just talk to them.
I will have to watch the amount of extra stimulation outside of school time though. Amelia was sooooooo overly tired tonight!
____________________________________________
Things are going extremely well and I am excited about personal growth in the future.
(I just need to work through issues on what has always been my "mantra" on Amelia's life and my constant part in it. Time to let others help).
I don't know how much more I will be able to blog for though.
Family pressure to stop talking about issues within and immediately outside the home have become quite intense.
The kids are growing up and sick of people saying "I read online" and "I read what your mum wrote".
Scott says "I love reading what you write, but no one else reveals stuff like you do. Maybe we should start keep stuff to ourselves".
My parents are questioning the information I reveal.
I have always been extremely open, but I have also been the one to receive the negativity and nasty comments.
Maybe it is time for private blogs.
Things are going well for now.
Maybe I have written enough in the past 8 years to show the disability pathway and heartbreak of a parent.
As Amelia says "YOLO".
You Only Live Once.
From someone that honestly knows there is no timeline on "that once", maybe I should sign off on that motto.....
Or the one I will always live by for Amelia......
No Regrets At The End.
Cant get better than that!
Many 80 year olds would love the life she has lived so far.
The love surrounding Amelia would be the number 1 request on anyone's list.
Love to you all.
xxx
xxx
(Please read the 2 blogs below before this one!)
This week our very first carers arrived!
We were all excited, petrified and realised it will take time to get used to.
Tom said "I probably shouldn't do play station while they are here".
"Nooooooo" I said.
"We all need to act and live normal!".
We have all discussed the new energy and ideas that will start coming regularly
(in the form of people!).
BUT how we are also all ingrained in routine and quiet time.
We have become such hermits and it is strange to have people coming and going regularly.
Hopefully they will inject another element of "fun" into Amelia's life.
She is truly ready for it and has already embraced it readily.
The rest of us need to just get used to it.
_____________________________________
In this whole process of understanding and accepting help from the outside, I have personally struggled , sometimes despite my online positive comments!
For 6 months, I have been preparing Amelia, while probably preparing myself more.
I know it is not admitting defeat, but that is how I have been honestly feeling.
Admitting that, even though I am a full time carer........... "I need help",
Even though "I am her mother and she is my responsibility".............. I need help.
Letting someone else have experiences with Amelia, regularly, that I should be having with her....
But this is part of the possibly "unhealthy" closeness Amelia and I have now.
We need time with others and apart now.
My body, my mind, Tom and Scott, need me to dedicate time to them too now.
In my process to find people to help us, I hurt someone special, dearly.....and her family.
I had a meltdown and struggled with it all recently.
I was cruel and unkind to someone.
I will be forever upset with myself for losing this person as a carer (and Scott and Amelia will never let me forget, because they thought she was awesome).
Another strike, cross and mark against my name.
Special needs and fear has changed me forever.
Sometimes I truly despise the person I have become.
Sorry.
That is very blunt........
BUT when you are handed a life of confusion, it is very difficult to know how to handle, confront and solve it....and situations that arise.
Especially in a situation like ours.
I will forever sincerely apologise to this family for my wrong choice of comment and behaviour.
______________________________________
Tom has decided to sign up for the ican challenge at his school.
When you learn about what that is, you will understand about why I may have hyperventilated momentarily.
In 7 weeks time, Tom (or Tommy for anyone around him)
will partake in a Royal Children's Hospital fundraising walk FROM Frankston Pier TO St Kilda.
50 kms.
50 F'N Kms !!!!!
BREATHE. BREATHE.
Type 1 Diabetics will understand my heart attack, fainting spell and loss of breath.
Serious Hypo Situation.
(Dropping too low into an unconscious state after the event).
BUT, BUT, BUT,
If anyone is going to look after himself and follow the rules.........
Actually NO!
Type 1 Diabetes is soooooo unpredictable, it is going to be a rollercoaster!!!!
If anyone is going to prove that diabetes cannot stop him though,
it will definitely be Tom ......
sorry Tommy.
TOM FOR GOLD!!!!!!
Or just completing the 50 km's and not ending up in hospital, would be good!
(disclosure - mum- Amanda will spend the next few weeks in contact with RCH to ensure diabetic child has a reasonable plan in place!)
(that will not work of course- type 1 does what it wants!)
(A plan that has insulin, sugar and carbs ready for a 50km walk - it will be totally inaccurate and mum will administer appropriate crap).
Tommy's mum will have anything and everything possibly needed.
Because she will drive the whole f'n thing !
_________________________________________________
Rewinding back to my early years, when I met Scott (1990 - 15 years old), I also met his 2 best friends.
Both friends had the most amazing mum's ever.
One mum of one of the boys had the most laid back golden retriever you have ever met.
This guy was one of the people that let me intrude the small "best friend" group they had created.
Actually, I think he hated me for a long time (but don't tell him I said that!).
We were only 15 years old!
He slowly let me get to know him while I got to know "his life".
For all the single mums out there, this guys mum was amazing.
She struggled and fed and clothed him on her own.
She housed him, while trying to live a life of her own also.
She was welcoming and amazing.
In the last 2 decades we all grew apart sadly.
Last week the stars aligned to remind him that "this group of friends" would always be there for each other.
The messages started last week about this amazing mothers ill health.
Last weekend she passed away.
I feel like this extraordinary strength of my youth and a role model to women in general has passed.
I feel this extraordinary man, that has followed and private messaged us on numerous Amelia's project blogs, has developed perfectly by the love of his mother.
Sometimes there are friends that will be friends forever, no matter the past.
Continue being the amazing person you have become.
See you at the funeral xxx
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My Kitchen table is currently covered in a massive amount of paperwork and has a laptop in the middle of it all.
This NDIS plan is going to be very thorough and detailed!!!!
They want independence and quality of life for Amelia?
I am offering loads of opportunities for her to have it.
She has gone without equipment etc because of cost and timespan to receive and all of that is about to change. I am determined to research, learn and apply for everything she honestly deserves in the next few weeks under the new NDIS plan
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Finally.....
Last night Amelia had her nails done by the carers that came.
They started the process of a Communication Wall that I had prepared that shows Amelia what is happening and when. It includes a section for her to write what she would like to do and try in the future with these people.
I was able to cook tea and spend time with Tom.
Tonight I was able to watch Tom's footy training on the beach and socialise with parents (I am always isolated with Amelia because we can't get her on the sand).
I cant leave him and take her for a walk in situations like beach footy, because of his Type 1, and the exercise could cause him to hypo.
But tonight a carer took her for a nature walk around the area and bought her an ice-cream. She had an AMAZING time. They apparently laughed, giggled and accidently got themselves soaked by a faulty drink tap!
I was given the chance to talk to adults.
Many that have been around Tom's footy team for 3+ years.
I have never been able to just talk to them.
I will have to watch the amount of extra stimulation outside of school time though. Amelia was sooooooo overly tired tonight!
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Things are going extremely well and I am excited about personal growth in the future.
(I just need to work through issues on what has always been my "mantra" on Amelia's life and my constant part in it. Time to let others help).
I don't know how much more I will be able to blog for though.
Family pressure to stop talking about issues within and immediately outside the home have become quite intense.
The kids are growing up and sick of people saying "I read online" and "I read what your mum wrote".
Scott says "I love reading what you write, but no one else reveals stuff like you do. Maybe we should start keep stuff to ourselves".
My parents are questioning the information I reveal.
I have always been extremely open, but I have also been the one to receive the negativity and nasty comments.
Maybe it is time for private blogs.
Things are going well for now.
Maybe I have written enough in the past 8 years to show the disability pathway and heartbreak of a parent.
As Amelia says "YOLO".
You Only Live Once.
From someone that honestly knows there is no timeline on "that once", maybe I should sign off on that motto.....
Or the one I will always live by for Amelia......
No Regrets At The End.
Cant get better than that!
Many 80 year olds would love the life she has lived so far.
The love surrounding Amelia would be the number 1 request on anyone's list.
Love to you all.
xxx
xxx
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