To Dear Scott, Amelia and Tommy,
PLEASE READ TILL THE END
I am so incredibly sorry.
I am so incredibly sorry that my emotions surpass our everyday life for you ALL.
I am so incredibly sorry that I have lived the last 9.5 years preparing for one of my beautiful children's inevitable death in this house.
SO much of what I have done and said may connect to this.
OR I could just be naturally a nasty person, to cause so much trouble and create SO much hate...
I do not know.
OR a genuinely kind one.
Who will ever know.
What we were told at 3pm on December 10th 2010, has reshaped MY life and ALL of our lives forever.
"Go home and cherish Amelia" they said in that sad and sorrid room
Have a massive party if she ever reaches 18 years old" we were told.
I will never forget that Oprah Winfrey had just finished her LIVE Melbourne show that day.....
We were trying to get home in the same traffic as the audience of that show.
When we finally arrived home, our beautiful neighbour removed Amelia out of the car and asked "How did the meeting go?".
Through immense tears, I shook my head and said "Just look after her for a while please. I need to escape for a minute"."
As she took her away, crying herself, I went to sit alone in my car and cry.
We had arrived, at our local Royal children's Hospital, 1 week earlier, with a child who stumbled walking and had slurred speech.
I had already written on Facebook that a random Neurologist had commented offhandedly "part of her brain has apparently disappeared".
I then wrote about other tests and comments on my FB account over the next 5 days in December 2010.
Amelia was going to die at anytime.
It is now, 10 years later, AND SHE IS STILL HERE xxx
Fast Forward to now.
June 2020.
Many friends have gone........
because of ME and my reactions and online emotions,
AND because they cannot handle watching Amelia's decline,
AND because they lost interest long ago..
Monday 1 June 2020
Monday 16 March 2020
The Conara Virus/ us and one of our Matriarch's
Hello Amazing people!
The Conara Virus has been hilarious in Australia..........
Kind of.
Until we realised that Amelia would not survive it.
Her lung capacity cannot even perform a basic lung test, her power is so low.
How can she compete against the Conara Virus?
A worldwide pandemic?
The depletion of items at Supermarkets made us laugh hysterically intially ,
until we realised Amelia would not survive it, if she caught it.
We were suddenly told to stock up on Amelia and Tom's Insulin, as it is about to run out........
Internationally.
LIFE SAVING MEDICINE!
Are you fucking serious?!
So then we have 2 kids that may not survive this supposed pandemic.
Or 2 kids that may not survive the medical shortfall worldwide.
As we announced the decision to keep Amelia home indefinitely, the amount of messages of help,
love and support has been heartwarming.
I will probably need all the local people (friends and employed carers) at some stage........
At one small stage or another.
(That have no symptoms of sickness OR been within no areas of sickness)
But we will run out of "carers money" from the Government........
then I will have no employment money help.
It is sad that other countries are calling their citizens home "immediately" as Australia's guidelines are too lax.
Denmark is an example in the last 48 hours, as they are concerned with Australia's "relaxed" rules.
BUT MY BIGGEST UPSET............
When Amelia was diagnosed........
In 2010 and we were told that she would die soon........
One person came on the Facebook Page (you will find a Facebook Page For ANY diagnosis or condition!)
SHE TOLD ME
Life would continue.
SHE TOLD ME
We would be ok.
SHE TOLD ME
Her Grandaughter was my child's TWIN.
In EVERY way.
Then her grandaughter died.
Miss Lana
Her Grandaughter died in 2019.
Today the grandmother died of Cancer
My Matriach.
My Mentor.
I Lost it.
Literally sobbing.
I loved her.
xxx
The Conara Virus has been hilarious in Australia..........
Kind of.
Until we realised that Amelia would not survive it.
Her lung capacity cannot even perform a basic lung test, her power is so low.
How can she compete against the Conara Virus?
A worldwide pandemic?
The depletion of items at Supermarkets made us laugh hysterically intially ,
until we realised Amelia would not survive it, if she caught it.
We were suddenly told to stock up on Amelia and Tom's Insulin, as it is about to run out........
Internationally.
LIFE SAVING MEDICINE!
Are you fucking serious?!
So then we have 2 kids that may not survive this supposed pandemic.
Or 2 kids that may not survive the medical shortfall worldwide.
As we announced the decision to keep Amelia home indefinitely, the amount of messages of help,
love and support has been heartwarming.
I will probably need all the local people (friends and employed carers) at some stage........
At one small stage or another.
(That have no symptoms of sickness OR been within no areas of sickness)
But we will run out of "carers money" from the Government........
then I will have no employment money help.
It is sad that other countries are calling their citizens home "immediately" as Australia's guidelines are too lax.
Denmark is an example in the last 48 hours, as they are concerned with Australia's "relaxed" rules.
BUT MY BIGGEST UPSET............
When Amelia was diagnosed........
In 2010 and we were told that she would die soon........
One person came on the Facebook Page (you will find a Facebook Page For ANY diagnosis or condition!)
SHE TOLD ME
Life would continue.
SHE TOLD ME
We would be ok.
SHE TOLD ME
Her Grandaughter was my child's TWIN.
In EVERY way.
Then her grandaughter died.
Miss Lana
Her Grandaughter died in 2019.
Today the grandmother died of Cancer
My Matriach.
My Mentor.
I Lost it.
Literally sobbing.
I loved her.
xxx
Wednesday 26 February 2020
Hello Friends,
2020 has turned out to be all over the place!
Amelia spent the holidays saying "only 2 more years" OF school.
She was dreading going back, for reasons personal to her.
Thankfully that attitude has changed now in Week 5!
Thank you to Emma, Jade and Jackie for creating a fun, loving and caring classroom.
Amelia is once again enjoying going to school and is learning to ignore what her "empathy" picks up from staff and students.
I do not think our gorgeous carers (including Kristian) helped that situation, because she just wants to spend her time with all of them!
She calls them "my best friends" and I do truly believe they all behave like they are.
They just provide TOO much fun, companionship and equality, in what is essentially "short lived lives".
I am choosing not to talk about my Tom anymore on here or FB.
It is time for him to SHINE on his own.
Just know that he is amazing and starting to enter the real creation of his own life.
He will always be loud.
He will always have a BIG personality.
He will always be clever in class.
And he will always be surrounded by friends that he will love and protect fiercely.
And he has the grounding, from a lifetime with a very happy, yet ill sister, to see everything from a completely unique, compassionate perspective.
He may no longer show it towards Amelia, but I see him displaying it towards his friends.
Tom's life has now been told it explicitly, it is "his own choosing".
Behave, do work in class in class and accept education, OR go elsewhere, where the entire family has choice in regards to home loan repayments, holidays etc...........
I have spent the last 12 months on a journey discovering my own addictive personality and coping mechanisms as I live this life.
Scott was recently home for many hours, while one of our gorgeous carers was here.
"Amelia constantly called out to me" he said.
"Wanted me to help.... Wanted me to answer...... Wanted me to listen..... Wanted me to be involved."
He said.
"The carer kept saying...... Amelia I am here. But she just wanted me involved too" Scott said.
"YOU NEED A BREAK,
if this is what she does to you too" he said to me.
"I realise now how much she still involves and needs us.
How YOU are still not getting a break needs to be looked at" he said.
My own Mental Health focus has been working on emotional eating, how cigarettes helped and how alcohol is a form of escapism.
Destructive Behaviour essentially.
I have been fortunate enough to have MANY friends open up to me about their own destructive behaviours and escapism "from life".
Particularly alcohol.
Whether it is one glass or one bottle every night......
Or at least regularly, it is an addiction.
Anyway, I am not here to neither lecture or divulge my or anyone else's mission...........
Just know.........
WHATEVER YOUR BATTLE IS, IT IS OK.
ONLY as long as you recognise it and try to address it.
I am trying my best.
And so can you.
My amazing Husband, is currently in a hospital for an overnight sleep test.
He was recently diagnosed with "Central Sleep Apnea", rather than the normal "Obstructive Sleep Apnea".
It means his brain shuts down totally during sleep, rather than just his airways.
https://www.sleepapnea.org/learn/sleep-apnea/central-sleep-apnea/
Suddenly he was no longer allowed to drive and was told "you should be dead by now".
ONLY OUR FAMILY!
Lol
Is it wrong to laugh at this as the writer?!
This condition is normally secondary to another condition, so we are currently working our way through the tests.
Last week he was told his heart is great and he has not had a stroke (2 causes of central sleep apnea).
Tonight his brain is being scanned the entire time he sleeps (in a hospital bed with many wires connected to him!).
Even though the heart has been cleared..........
the brain is a major possible cause for Central sleep apnea.
YAAAAAAAAAAYYYYYY
NOT!
Neurological conditions like Parkinson's and MS are major causes.
I end with the main reason we started this page on Facebook
https://www.facebook.com/groups/ameliasproject/?ref=bookmarks
AMELIA TURNS 18 NEXT YEAR!!!!!!!!!!!!!!!!!!!!!!!
This is HUGE!!!!!!!
JUNE 2021
This is HUGE.
Amelia was never meant to reach 18 years old.
What can we do to celebrate?!.
As we left RCH in December 2010, they said,
"Cherish her and enjoy every moment. If she makes 18, create a MAJOR party"
Any Idea's on a major party?!
June 2020.
THIS PARTY SHOULD BE EPIC.
And
THANK YOU.
THANK YOU FOR SHOWING INTEREST and staying with us.
xxx
xxx
2020 has turned out to be all over the place!
Amelia spent the holidays saying "only 2 more years" OF school.
She was dreading going back, for reasons personal to her.
Thankfully that attitude has changed now in Week 5!
Thank you to Emma, Jade and Jackie for creating a fun, loving and caring classroom.
Amelia is once again enjoying going to school and is learning to ignore what her "empathy" picks up from staff and students.
I do not think our gorgeous carers (including Kristian) helped that situation, because she just wants to spend her time with all of them!
She calls them "my best friends" and I do truly believe they all behave like they are.
They just provide TOO much fun, companionship and equality, in what is essentially "short lived lives".
I am choosing not to talk about my Tom anymore on here or FB.
It is time for him to SHINE on his own.
Just know that he is amazing and starting to enter the real creation of his own life.
He will always be loud.
He will always have a BIG personality.
He will always be clever in class.
And he will always be surrounded by friends that he will love and protect fiercely.
And he has the grounding, from a lifetime with a very happy, yet ill sister, to see everything from a completely unique, compassionate perspective.
He may no longer show it towards Amelia, but I see him displaying it towards his friends.
Tom's life has now been told it explicitly, it is "his own choosing".
Behave, do work in class in class and accept education, OR go elsewhere, where the entire family has choice in regards to home loan repayments, holidays etc...........
I have spent the last 12 months on a journey discovering my own addictive personality and coping mechanisms as I live this life.
Scott was recently home for many hours, while one of our gorgeous carers was here.
"Amelia constantly called out to me" he said.
"Wanted me to help.... Wanted me to answer...... Wanted me to listen..... Wanted me to be involved."
He said.
"The carer kept saying...... Amelia I am here. But she just wanted me involved too" Scott said.
"YOU NEED A BREAK,
if this is what she does to you too" he said to me.
"I realise now how much she still involves and needs us.
How YOU are still not getting a break needs to be looked at" he said.
My own Mental Health focus has been working on emotional eating, how cigarettes helped and how alcohol is a form of escapism.
Destructive Behaviour essentially.
I have been fortunate enough to have MANY friends open up to me about their own destructive behaviours and escapism "from life".
Particularly alcohol.
Whether it is one glass or one bottle every night......
Or at least regularly, it is an addiction.
Anyway, I am not here to neither lecture or divulge my or anyone else's mission...........
Just know.........
WHATEVER YOUR BATTLE IS, IT IS OK.
ONLY as long as you recognise it and try to address it.
I am trying my best.
And so can you.
My amazing Husband, is currently in a hospital for an overnight sleep test.
He was recently diagnosed with "Central Sleep Apnea", rather than the normal "Obstructive Sleep Apnea".
It means his brain shuts down totally during sleep, rather than just his airways.
https://www.sleepapnea.org/learn/sleep-apnea/central-sleep-apnea/
Suddenly he was no longer allowed to drive and was told "you should be dead by now".
ONLY OUR FAMILY!
Lol
Is it wrong to laugh at this as the writer?!
This condition is normally secondary to another condition, so we are currently working our way through the tests.
Last week he was told his heart is great and he has not had a stroke (2 causes of central sleep apnea).
Tonight his brain is being scanned the entire time he sleeps (in a hospital bed with many wires connected to him!).
Even though the heart has been cleared..........
the brain is a major possible cause for Central sleep apnea.
YAAAAAAAAAAYYYYYY
NOT!
Neurological conditions like Parkinson's and MS are major causes.
I end with the main reason we started this page on Facebook
https://www.facebook.com/groups/ameliasproject/?ref=bookmarks
AMELIA TURNS 18 NEXT YEAR!!!!!!!!!!!!!!!!!!!!!!!
This is HUGE!!!!!!!
JUNE 2021
This is HUGE.
Amelia was never meant to reach 18 years old.
What can we do to celebrate?!.
As we left RCH in December 2010, they said,
"Cherish her and enjoy every moment. If she makes 18, create a MAJOR party"
Any Idea's on a major party?!
June 2020.
THIS PARTY SHOULD BE EPIC.
And
THANK YOU.
THANK YOU FOR SHOWING INTEREST and staying with us.
xxx
xxx
Monday 13 January 2020
Hello Awesome People.
(apologies! The blog seems to like MASSIVE spacing tonight!)Massive hugs to all those affected by these horrendous bushfires, in Australia, and the defenceless animals in its path.
We are only surrounded by the smoke and the news portraying to us your horrible anguish.
We send massive love and hugs.
Today my post is about my Tommy with the BIG personality (as I am constantly told!).
It is now 2020 and Tommy is 13.5 years old.
He was 5 weeks old when Amelia was diagnosed with Mild Cerebral Palsy.
Tom was 4 years old when Amelia was re-diagnosed with Ataxia Telangiectasia.
He was 9 years old when she was diagnosed with Ovarian Cancer.
Christmas Eve 2013
HE was diagnosed with Type 1 Diabetes.
"His Blood Test has returned with a highly dangerous level of glucose.
Get him to Emergency immediately" Scott was told by our local GP on the phone.
As Scott left to take him, I felt my legs, at the front door, collapse underneath me as he reversed out of the driveway.
I lay on the front door ramp (built for Amelia) sobbing.
I could not possibly find anymore emotional energy or coping skills to deal with this.
I knew nothing about Type 1 Diabetes.
I could not possibly cope with ANOTHER diagnosis.
Scott posted a photo of Tom on a drip in Emergency to Social Media.
3 people on this page arrived at our house immediately........
with young children themselves.
Santa's presents were wrapped by them
(Tom may have accidently ended up with pink underwear!).
As I went to sleep Christmas Eve 2013 on a crappy Hospital bed, next to Tommy, I cried.
The next morning Tommy awoke to a Santa sack full of presents.
"I am not opening them until Amelia gets here with hers" he said.
Suddenly nurses start arriving with gifts from someone "that delivers gifts to whoever is stuck in hospital Christmas Day".
Books, football, water pistol etc.............
I think Tommy (the only inpatient) and the nurses destroyed the Children's ward's Christmas decorations with the football that morning!!!!
We waited in that hospital 5 days for the Diabetes staff to return to work.
We had amazing friends and family visit over such a massive Holiday break.
We may have walked around with undies on our heads
(anything to stay sane......or not).
Fast Forward to a Family Diabetes Victoria CAMP in May 2014.
At the first meal, Tommy and I stood in the middle of a room full of 60 Diabetic kids all giving themselves finger pricks and needles at the same time.
"If this doesn't make you feel normal, nothing will" I may have said to Tommy!
This is where I found like minded alcoholics.
We may have had a night after the children went to bed to drink and talk.
But you did not hear that here.
(Please note: No more alcohol here!).
Then Tommy started attending Camps on his own.
The first one was like a Hollywood movie, with him being pulled away by staff in slow motion and us slowly waving and slowly walking away.
We went home and sat in silence for 3 nights.
As we arrived back at THAT camp (2 hours away) to pick him up.........
I was helping Amelia out of the car, in her wheelchair, and heard
"Muuuuuuuuuuum. I am not coming home EVEEEEEEEER".
Wasted that time without him, didn't we?!?!
8 years old and he met heaps of kids and adult volunteers (all Type 1 Diabetic themselves)
I was drowned in comments from kids, parents and adults about how "awesome" Tommy is.
"BIG personality, and AWESOME".
and also so began the initial friendship with Noah.................
Tom has now attended 5+ camps with Diabetes Victoria.
EVERY SINGLE TIME he comes home with better thinking and ideas on how to take care of his Diabetes.
And new friends......
AND still always Noah.
I had to literally drag him to the last camp in September 2019.
Too cool for school.
BUT he needs constant reminding that he could be blind by 30 years old or lose a limb by 40, if he doesnt look after himself.
BUT me, myself and I am in a difficult position.
I have a child with a terminal illness that has a MASSIVE sweet tooth.
Quality of Life AND Amazing Life AND No regrets at the end.
Amelia wants a donut, she can have a F'n donut!
BUT TOMMY can't.
It is not fair to place it in the pantry in front of him and tell him he cannot have it.
WE ARE NOW ON OUR 3RD HIDING PLACE!
I had great difficulty getting Tommy to this camp last year (Sept 2019).
Massive arguments, where he got other family members involved to defend him.
I showed these family members his high levels and missed checks.
That was a great way to say "shut the fuck up. He HAS to go."
I love and respect and listen to my family and friends, but THIS was something I knew Tommy needed.
He went.
He stayed.
He made friends, with lots and reconnected with Noah.
He had fun.
Below is a picture of lots of different Type 1 Diabetics.
Someone diagnosed at 11 months old,
someone hospitalised at 11 for severe anxiety over levels,
someone who does not care about their levels and doesn't bother,
someone diagnosed just last year,
someone diagnosed at 7,
someone diagnosed at 9,
kids on pumps,
kids on CGMS,
kids on syringes,
kids on pens...........
Someone that I told Tommy about before camp......
"He is shy and highly anxious about diabetes".
When i picked Tommy up he laughed about that child and said
"As soon as we started playing basketball he loosened up and started to trash talk.
I knew he was one of my people!".
And 6 years later, still Noah.
And MY kid who has only ever known a sister with a Terminal Diagnosis.
They all know this about each other, straight off, and they dont give a SHIT.
Needles, pens, pumps and finger pricks 4+ times a day.
They are Type 1 Diabetic together and that is all that matters.
Love and Hugs xxx
Tommy and Type 1 Diabetes
Hello Awesome People.
(apologies! The blog seems to like MASSIVE spacing tonight!)
Massive hugs to all those affected by these horrendous bushfires, in Australia, and the defenceless animals in its path.
We are only surrounded by the smoke and the news portraying to us your horrible anguish.
We send massive love and hugs.
Today my post is about my Tommy with the BIG personality "BUT he is a good kid Amanda" (as I am constantly told!).
It is now 2020 and Tommy is 13.5 years old.
He was 5 weeks old when Amelia was diagnosed with Mild Cerebral Palsy.
Tom was 4 years old when Amelia was re-diagnosed with Ataxia Telangiectasia.
He was 9 years old when she was diagnosed with Ovarian Cancer.
Christmas Eve 2013
HE was diagnosed with Type 1 Diabetes.
"His Blood Test has returned with a highly dangerous level of glucose.
Get him to Emergency immediately" Scott was told by our local GP on the phone.
As Scott left to take him, I felt my legs, at the front door collapse underneath me, as he reversed out of the driveway.
I lay on the front door ramp (built for Amelia) sobbing.
I could not possibly find anymore emotional energy or coping skills to deal with this.
I was already looking after a child with a Terminal illness.
I knew nothing about Type 1 Diabetes.
I could not possibly cope with ANOTHER diagnosis.
Scott posted a photo of Tom on a drip in Emergency to Social Media.
3 people on this page arrived at our house immediately........
with young children themselves.
Santa's presents were wrapped by them.
(Tom may have accidently ended up with pink "bikini style" underwear!).
As I went to sleep Christmas Eve 2013 on a crappy Hospital bed, next to Tommy, I cried.
I wondered what i had done wrong to produce children that experienced such heartache, worry and pain.
The next morning Tommy awoke to a Santa sack full of presents.
"I am not opening them until Amelia gets here with hers" he said.
Suddenly nurses start arriving with gifts from someone "that delivers gifts to whoever is stuck in hospital Christmas Day".
Books, football, water pistol etc.............
I think Tommy (the only inpatient) and the nurses destroyed the Children's ward's Christmas decorations with the football that morning!!!!
We waited in that hospital 5 days for the Diabetes staff to return to work.
We had amazing friends and family visit over such a massive Holiday break.
For people to visit on "Christmas Day: will never be forgotten.
We may have walked around with undies on our heads
(anything to stay sane......or not).
Fast Forward to a Family Diabetes Victoria CAMP in May 2014.
Free.
At the first meal, Tommy and I stood in the middle of a room full of 60 Diabetic kids all giving themselves finger pricks and needles at the same time.
"If this doesn't make you feel normal, nothing will" I may have said to Tommy.
This is where I found like minded alcoholics.
We may have had one night after the children went to bed to drink and talk.
That helped me to feel normal
(But you did not hear that here).
Then Tommy started attending Camps on his own.
The first one was like a Hollywood movie, with him being pulled away by staff in slow motion and us slowly waving and slowly walking away.
We went home and sat in silence for 3 nights.
As we arrived back at THAT camp (2 hours away) to pick him up.........
I was helping Amelia out of the car, in her wheelchair, and heard
"Muuuuuuuuuuum. I am not coming home EVEEEEEEEER".
Wasted that time without him, didn't we?!?!
8 years old and he met heaps of kids and adult volunteers (all Type 1 Diabetic themselves).
I was drowned in comments from kids, parents and adults about how "awesome" Tommy is.
"BIG personality, and AWESOME".
and also so began the initial friendship with Noah.................
Tom has now attended 5+ camps with Diabetes Victoria.
EVERY SINGLE TIME he comes home with better thinking and ideas on how to take care of his Diabetes.
And new friends......
AND still always Noah.
I had to literally drag him to the last camp in September 2019.
Too cool for school, because he missed the last one after slashing his leg open at Hisense Arena.
He had forgotten how good the camps were.
BUT he needs constant reminding that he could be blind by 30 years old or lose a limb by 40, if he doesnt look after himself.
BUT me, myself and I am in a difficult position.
I have a child with a terminal illness that has a MASSIVE sweet tooth.
Quality of Life AND Amazing Life AND No regrets at the end.
Amelia wants a donut, she can have a F'n donut!
BUT HE can't.
It is not fair to place it in the pantry in front of him and tell him he cannot have it.
WE ARE NOW ON OUR 3RD HIDING PLACE!
I had great difficulty getting Tommy to this camp last year (Sept 2019).
Massive arguments, where he got other family members involved to defend him.
I showed these family members his high levels and missed finger prick checks.
That was a great way to say "shut the fuck up. He HAS to go."
I love and respect and listen to my family and friends, but THIS was something I knew Tommy needed.
He went.
He stayed.
He made friends, with lots and reconnected with Noah.
We had been contacted about one highly anxious child who was shy.
Wasn't coping with Type 1 and had never been on camp, despite being diagnosed 5 years ago.
"Could Tom try and be friends with him?" I was asked.
When we met this child at "check in", Tom said "It will be hard" as the child was very shy.
He actually had fun on camp.
"THAT CHILD started talking trash while playing basketball, as soon as you all left and I knew he was one of my people" Tom said at pick up.
Below is a picture of lots of different Type 1 Diabetics.
Someone diagnosed at 11 months old, someone hospitalised at 11 for severe anxiety over levels, someone who does not care about their levels and doesn't bother, someone diagnosed just last year, someone diagnosed at 7, someone diagnosed at 9, kids on pumps, kids on CGMS, kids on syringes, kids on pens...........
And 6 years later, still Noah.
And a kid who has only ever known a sister with a Terminal Diagnosis.
They all know this about each other, straight off, and they dont give a SHIT.
They are Type 1 Diabetic together and that is all that matters.
(apologies! The blog seems to like MASSIVE spacing tonight!)
Massive hugs to all those affected by these horrendous bushfires, in Australia, and the defenceless animals in its path.
We are only surrounded by the smoke and the news portraying to us your horrible anguish.
We send massive love and hugs.
Today my post is about my Tommy with the BIG personality "BUT he is a good kid Amanda" (as I am constantly told!).
It is now 2020 and Tommy is 13.5 years old.
He was 5 weeks old when Amelia was diagnosed with Mild Cerebral Palsy.
Tom was 4 years old when Amelia was re-diagnosed with Ataxia Telangiectasia.
He was 9 years old when she was diagnosed with Ovarian Cancer.
Christmas Eve 2013
HE was diagnosed with Type 1 Diabetes.
"His Blood Test has returned with a highly dangerous level of glucose.
Get him to Emergency immediately" Scott was told by our local GP on the phone.
As Scott left to take him, I felt my legs, at the front door collapse underneath me, as he reversed out of the driveway.
I lay on the front door ramp (built for Amelia) sobbing.
I could not possibly find anymore emotional energy or coping skills to deal with this.
I was already looking after a child with a Terminal illness.
I knew nothing about Type 1 Diabetes.
I could not possibly cope with ANOTHER diagnosis.
Scott posted a photo of Tom on a drip in Emergency to Social Media.
3 people on this page arrived at our house immediately........
with young children themselves.
Santa's presents were wrapped by them.
(Tom may have accidently ended up with pink "bikini style" underwear!).
As I went to sleep Christmas Eve 2013 on a crappy Hospital bed, next to Tommy, I cried.
I wondered what i had done wrong to produce children that experienced such heartache, worry and pain.
The next morning Tommy awoke to a Santa sack full of presents.
"I am not opening them until Amelia gets here with hers" he said.
Suddenly nurses start arriving with gifts from someone "that delivers gifts to whoever is stuck in hospital Christmas Day".
Books, football, water pistol etc.............
I think Tommy (the only inpatient) and the nurses destroyed the Children's ward's Christmas decorations with the football that morning!!!!
We waited in that hospital 5 days for the Diabetes staff to return to work.
We had amazing friends and family visit over such a massive Holiday break.
For people to visit on "Christmas Day: will never be forgotten.
We may have walked around with undies on our heads
(anything to stay sane......or not).
Fast Forward to a Family Diabetes Victoria CAMP in May 2014.
Free.
At the first meal, Tommy and I stood in the middle of a room full of 60 Diabetic kids all giving themselves finger pricks and needles at the same time.
"If this doesn't make you feel normal, nothing will" I may have said to Tommy.
This is where I found like minded alcoholics.
We may have had one night after the children went to bed to drink and talk.
That helped me to feel normal
(But you did not hear that here).
Then Tommy started attending Camps on his own.
The first one was like a Hollywood movie, with him being pulled away by staff in slow motion and us slowly waving and slowly walking away.
We went home and sat in silence for 3 nights.
As we arrived back at THAT camp (2 hours away) to pick him up.........
I was helping Amelia out of the car, in her wheelchair, and heard
"Muuuuuuuuuuum. I am not coming home EVEEEEEEEER".
Wasted that time without him, didn't we?!?!
8 years old and he met heaps of kids and adult volunteers (all Type 1 Diabetic themselves).
I was drowned in comments from kids, parents and adults about how "awesome" Tommy is.
"BIG personality, and AWESOME".
and also so began the initial friendship with Noah.................
Tom has now attended 5+ camps with Diabetes Victoria.
EVERY SINGLE TIME he comes home with better thinking and ideas on how to take care of his Diabetes.
And new friends......
AND still always Noah.
I had to literally drag him to the last camp in September 2019.
Too cool for school, because he missed the last one after slashing his leg open at Hisense Arena.
He had forgotten how good the camps were.
BUT he needs constant reminding that he could be blind by 30 years old or lose a limb by 40, if he doesnt look after himself.
BUT me, myself and I am in a difficult position.
I have a child with a terminal illness that has a MASSIVE sweet tooth.
Quality of Life AND Amazing Life AND No regrets at the end.
Amelia wants a donut, she can have a F'n donut!
BUT HE can't.
It is not fair to place it in the pantry in front of him and tell him he cannot have it.
WE ARE NOW ON OUR 3RD HIDING PLACE!
I had great difficulty getting Tommy to this camp last year (Sept 2019).
Massive arguments, where he got other family members involved to defend him.
I showed these family members his high levels and missed finger prick checks.
That was a great way to say "shut the fuck up. He HAS to go."
I love and respect and listen to my family and friends, but THIS was something I knew Tommy needed.
He went.
He stayed.
He made friends, with lots and reconnected with Noah.
We had been contacted about one highly anxious child who was shy.
Wasn't coping with Type 1 and had never been on camp, despite being diagnosed 5 years ago.
"Could Tom try and be friends with him?" I was asked.
When we met this child at "check in", Tom said "It will be hard" as the child was very shy.
He actually had fun on camp.
"THAT CHILD started talking trash while playing basketball, as soon as you all left and I knew he was one of my people" Tom said at pick up.
Below is a picture of lots of different Type 1 Diabetics.
Someone diagnosed at 11 months old, someone hospitalised at 11 for severe anxiety over levels, someone who does not care about their levels and doesn't bother, someone diagnosed just last year, someone diagnosed at 7, someone diagnosed at 9, kids on pumps, kids on CGMS, kids on syringes, kids on pens...........
And 6 years later, still Noah.
And a kid who has only ever known a sister with a Terminal Diagnosis.
They all know this about each other, straight off, and they dont give a SHIT.
They are Type 1 Diabetic together and that is all that matters.
I have said many times over the years, I need a village around Tom to not only help ME, but help HIM.
There is nothing more perfect than finding "My People".
Love and Hugs xxx
Sunday 22 December 2019
Christmas 2019
To Our Village,
Tonight, as I finally sit at 10:29pm, I want to take the time to reflect, thank and apologise.
I have always said that I was not the right person to give a child like Amelia to.
I WILL ALWAYS feel that way.
I am totally the wrong person.
I am EXTREMELY emotional, think too much, talk WAY too much and am too protective over those that I love..........that I do everything mentioned previously ON REPEAT.
Sometimes I feel like I have won tattslotto with what has happened in the last 9 years.
Mostly I don't.
It has all changed me for the better INTERNALLY...
But changed me for the worst EXTERNALLY.
I have been gifted a tolerant (many will high five that one!), caring, supportive and independent individual in his own right = HUSBAND.
I have been gifted a defiant, sport mad, intelligent, kind, BIG personality, thoughtful and argumentative = SON.
I have also been gifted a = DAUGHTER who speaks way beyond her years and expected thinking for someone born in 2003.
She teaches others what can never be taught in schools or books.
She makes others FEEL love that blindsides you.
She teaches you personal growth you never knew possible.
And then they are stuck with ME!
I am not looking for sympathy or positive comments, so don't bother.
I just want to thank OUR VILLAGE tonight.
Whether you dislike one or all of us, you are on this page for a reason.
Maybe it is gossip or curiosity.
Maybe it is genuine admiration and/or love.
(After 9 years since diagnosis, you recognise friendship, gossip-mongers and people offended easily more closely.
It is like a microscope with my emotions and level of thinking!).
As we complete 2019, I thank anyone that made Scott, Tommy or Amelia smile and feel genuine happiness.
Thank you for creating, continuing or trying to establish friendship, support and genuine love with any of them.
As always, we have had our struggles this year.......
BUT so has anyone and everyone.
It is what they call, LIFE.
Scott has a small network around him that he adores.
Tommy has one that is constantly dissolving and growing with his young age.
People that he can turn to at anytime.
Tommy has just returned home from one of his "other families", in another Australian state and the happiness and love is flowing off him.
I have considered their son one of my own since 2014.
I adore him.
I would not hesitate to have him living with us, I adore him that much!
And Amelia has had her carers, OR best friends as she prefers to call them.
They do their hours.
They spend time with her.
They establish "their connection and time with her".
Then they start to stay longer and then they message her frequently.
Then they have her stay overnight at their place free.........
Then they become family and I grow too close...........
I become protective and learn to love them too.
Professional relationship lost.
Scott has taught Amelia how to message through "voice command".
I have no idea what is going on with her messages anymore!
I do not know what messages she is sending!
Just like Tom!
Welcome to teenage hood.
We have amazing people come 4 times a week, into our home, to spend time with Amelia.
No matter what is occurring here or what mood any of us are in (predominately ME as I am the one here constantly).............
I am the only one that cannot lock myself away in a room away from our beautiful helpers...
I treat them too closely.
I know no other way, when they come into my home and act like they live here regularly.
They are people who genuinely love MY Amelia.
They become family.
THANK YOU to our amazing carers......
BUT now thank you to EVERYONE ON HERE.
Thank you to Amelia's Village.
OUR VILLAGE.
Tommy also has a massive one.
Thank you for your love support and hopefully personal growth through my writing.
Merry Christmas 2019.
xxx
Tonight, as I finally sit at 10:29pm, I want to take the time to reflect, thank and apologise.
I have always said that I was not the right person to give a child like Amelia to.
I WILL ALWAYS feel that way.
I am totally the wrong person.
I am EXTREMELY emotional, think too much, talk WAY too much and am too protective over those that I love..........that I do everything mentioned previously ON REPEAT.
Sometimes I feel like I have won tattslotto with what has happened in the last 9 years.
Mostly I don't.
It has all changed me for the better INTERNALLY...
But changed me for the worst EXTERNALLY.
I have been gifted a tolerant (many will high five that one!), caring, supportive and independent individual in his own right = HUSBAND.
I have been gifted a defiant, sport mad, intelligent, kind, BIG personality, thoughtful and argumentative = SON.
I have also been gifted a = DAUGHTER who speaks way beyond her years and expected thinking for someone born in 2003.
She teaches others what can never be taught in schools or books.
She makes others FEEL love that blindsides you.
She teaches you personal growth you never knew possible.
And then they are stuck with ME!
I am not looking for sympathy or positive comments, so don't bother.
I just want to thank OUR VILLAGE tonight.
Whether you dislike one or all of us, you are on this page for a reason.
Maybe it is gossip or curiosity.
Maybe it is genuine admiration and/or love.
(After 9 years since diagnosis, you recognise friendship, gossip-mongers and people offended easily more closely.
It is like a microscope with my emotions and level of thinking!).
As we complete 2019, I thank anyone that made Scott, Tommy or Amelia smile and feel genuine happiness.
Thank you for creating, continuing or trying to establish friendship, support and genuine love with any of them.
As always, we have had our struggles this year.......
BUT so has anyone and everyone.
It is what they call, LIFE.
Scott has a small network around him that he adores.
Tommy has one that is constantly dissolving and growing with his young age.
People that he can turn to at anytime.
Tommy has just returned home from one of his "other families", in another Australian state and the happiness and love is flowing off him.
I have considered their son one of my own since 2014.
I adore him.
I would not hesitate to have him living with us, I adore him that much!
And Amelia has had her carers, OR best friends as she prefers to call them.
They do their hours.
They spend time with her.
They establish "their connection and time with her".
Then they start to stay longer and then they message her frequently.
Then they have her stay overnight at their place free.........
Then they become family and I grow too close...........
I become protective and learn to love them too.
Professional relationship lost.
Scott has taught Amelia how to message through "voice command".
I have no idea what is going on with her messages anymore!
I do not know what messages she is sending!
Just like Tom!
Welcome to teenage hood.
We have amazing people come 4 times a week, into our home, to spend time with Amelia.
No matter what is occurring here or what mood any of us are in (predominately ME as I am the one here constantly).............
I am the only one that cannot lock myself away in a room away from our beautiful helpers...
I treat them too closely.
I know no other way, when they come into my home and act like they live here regularly.
They are people who genuinely love MY Amelia.
They become family.
THANK YOU to our amazing carers......
BUT now thank you to EVERYONE ON HERE.
Thank you to Amelia's Village.
OUR VILLAGE.
Tommy also has a massive one.
Thank you for your love support and hopefully personal growth through my writing.
Merry Christmas 2019.
xxx
Saturday 21 December 2019
A Perfect Life
Hello Fellow Inmates.
Just a quick post tonight due to the time and the fact I actually get a sleep in tomorrow!
This week, I realised that Amelia has been slowly teaching me the lesson of "Perfection".
Or "The Perfect Life".
Or "Expectations of life and others".
She has actually been teaching it to me this whole year.
Or maybe the last 16 years.
More explanation will come soon, as that sleep in is screaming at me to come to bed...........
But at 10:59pm tonight (no alcohol since June 24th, before you ask!) I realised what she meant.
"No one can be perfect. No one can ever be. We all get angry and make mistakes".
Hmmmmmmmmmmmmm
This week I have made massive mistakes with some people, been loyal to others, stood up for my values and been abused.
A mixture of positive and negative really ............
So just like some other recorded times on here.
My level of emotional intellect and knowledge changed when I learnt that my child was going to die.
We are now into our 10th year of supposed Palliative Care.
Best not to give me anymore extreme/major emotional baggage about people outside my immediate family, if you are not prepared to help or doing anything about it yourself.
That is Lesson Number 878.371.
As we end one child's first year of High School and I find myself questioning the importance of social stance and personality excellence compared to academic excellence.....
I am reminded of my own final day of Year 7..........
As the teacher announced it would be her final day at the school.......
I stood up and applauded in excitement....... ALONE.
My mum was called in for a meeting.
Does the apple really fall far from the tree with Tom and his supposed BIG personality?
He has done NOTHING like that!
LOL
(I unfortunately have many more stories about myself").
He has parents ringing me asking me if he is going to parties.
"If he isn't, my child isn't either".
He is repulsed already from cigarettes and alcohol because of me.
He and his father could stand up in a court of law and fight a battle for days, defending each others clients.
He hates drugs because of someone else close to him.
I think he is going to be fine.
Is anyone ever perfect?
Doesn't everyone make mistakes?
Or do some of us just stay honest instead of ignoring and withholding the truth?
Does it help us decide true friends that know and/or see it all?
Does it help us improve and/or change ourselves?
Or do we just accept who we are?
Constant analysis, observation, understanding and acceptance as we work our way through every individual we encounter in life, I think leads towards perfection.
But no one will ever receive the certificate.
It may lead you, but no one will ever reach it,
Even though many think they have........
(especially after alcohol or marijuana!).
Perfection for one will never be perfection for another.
If you walk into a room full of 100 people, would you genuinely like and get along in an everyday situation with every single person?
No.
So how can you expect 100 people to genuinely like and get along in an everyday situation with YOU?
A constant life rule forever maybe.
xxx
Just a quick post tonight due to the time and the fact I actually get a sleep in tomorrow!
This week, I realised that Amelia has been slowly teaching me the lesson of "Perfection".
Or "The Perfect Life".
Or "Expectations of life and others".
She has actually been teaching it to me this whole year.
Or maybe the last 16 years.
More explanation will come soon, as that sleep in is screaming at me to come to bed...........
But at 10:59pm tonight (no alcohol since June 24th, before you ask!) I realised what she meant.
"No one can be perfect. No one can ever be. We all get angry and make mistakes".
Hmmmmmmmmmmmmm
This week I have made massive mistakes with some people, been loyal to others, stood up for my values and been abused.
A mixture of positive and negative really ............
So just like some other recorded times on here.
My level of emotional intellect and knowledge changed when I learnt that my child was going to die.
We are now into our 10th year of supposed Palliative Care.
Best not to give me anymore extreme/major emotional baggage about people outside my immediate family, if you are not prepared to help or doing anything about it yourself.
That is Lesson Number 878.371.
As we end one child's first year of High School and I find myself questioning the importance of social stance and personality excellence compared to academic excellence.....
I am reminded of my own final day of Year 7..........
As the teacher announced it would be her final day at the school.......
I stood up and applauded in excitement....... ALONE.
My mum was called in for a meeting.
Does the apple really fall far from the tree with Tom and his supposed BIG personality?
He has done NOTHING like that!
LOL
(I unfortunately have many more stories about myself").
He has parents ringing me asking me if he is going to parties.
"If he isn't, my child isn't either".
He is repulsed already from cigarettes and alcohol because of me.
He and his father could stand up in a court of law and fight a battle for days, defending each others clients.
He hates drugs because of someone else close to him.
I think he is going to be fine.
Is anyone ever perfect?
Doesn't everyone make mistakes?
Or do some of us just stay honest instead of ignoring and withholding the truth?
Does it help us decide true friends that know and/or see it all?
Does it help us improve and/or change ourselves?
Or do we just accept who we are?
Constant analysis, observation, understanding and acceptance as we work our way through every individual we encounter in life, I think leads towards perfection.
But no one will ever receive the certificate.
It may lead you, but no one will ever reach it,
Even though many think they have........
(especially after alcohol or marijuana!).
Perfection for one will never be perfection for another.
If you walk into a room full of 100 people, would you genuinely like and get along in an everyday situation with every single person?
No.
So how can you expect 100 people to genuinely like and get along in an everyday situation with YOU?
A constant life rule forever maybe.
xxx
Subscribe to:
Posts (Atom)