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
