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
Tuesday, 13 February 2018
Thursday, 1 February 2018
2018
Hey Guys,
Almost Midnight here, so just a quick post!
We are so busy with a million things happening or about to happen.
Everyone here is the best they have been in a very long time.
Our baby, Tom, entered Grade 6 this week.
I was almost as emotional as Prep!
He has an amazing group of kids around him (and parents!).
Amelia has entered a new grade.
Year 9.
New teacher and different friends.
The first new teacher in 4 years!
I am so incredibly proud to say, after all the anxiety over the holidays, that she has totally smashed it!
She is coming home happy and excited and full of stories.
Amelia is honestly taking life by the horns lately (please tell me that is a saying, because Scott tells me that I get them all wrong!- I am the person to unknowingly make up words to songs and common sayings!).
Amelia is really trying her best and using humour and sarcasm to get her through many situations lately. Thankfully school is genuine!
(I wonder who taught her that!).
One massive thing is that we are about to have "paid carers" enter our home.
"Well the government has saved lots of money on your family" one person at Amelia's school said.
Call me stupid (just looked up the meaning of Martyr and did not like it!) but I have always held the belief "I am her mother and I will look after her".
I realise now that she should have been introduced to people helping us earlier.
BUT I am not upset at myself for believing she was my responsibility only.
Maybe that has helped the close connection amongst all of us in the family.
All of us helping and learning compassion by helping one another.
My back and hip no longer want to be alone in this battle.
They have turned against me and gone to an agency.
I have spent the past 6 months preparing Amelia for this change and she is now saying "I AM SICK OF YOU ALL AND NEED NEW PEOPLE SPENDING TIME WITH ME".
Or yelling it.
I think I (or my hips and back) have prepared her well.
The Government have given me a small amount of money to pay someone for now.
MASSIVE.
A massive move for our family.
The hardest part is allowing people to enter our home every 2 days to care for a daughter that is mine.
To observe and judge and think on what is mine.
But I need to get over it.
It is what it is.
Another big thing to happen soon is the NDIS.
It is the new Australian Government disability insurance scheme that Amelia did the very first advertisement for a few years ago.
I cannot possibly describe how HUGE it is.
If I write the plan correctly and connect it to the correct links on their 50 plus pages of links....
I may be able to get her everything we have NEVER been able to afford.
I have done SO much study and need to do 3 times more to get her the best plan possible.
Stuff it up and you will be left with not much.
Have a look at the photo I recently posted on the FB page.
I am aiming for stuff like that.
They want "independence" and " quality of life", I have pages of things she needs.
I have so much that would help Amelia.
I seriously cannot wait.
But we can also only try, because they may say no.........
_______________
But as I said to Tom's new teacher this morning.....
As we finished discussing HIS diabetes....
I have no idea about either of the kids anymore.
I have no idea what may happen with Amelia this year and whether we will end up in hospital or not.
What her diagnosis or prognosis may be, after previous years.
I have no idea whether we will be in a dangerous life situation "health wise" or not.
BUT please rest assure, I have the most amazing village around us to look after Tom outside of school hours.
The most amazing people that adore and love and discipline him as much as we do.
There is also ONE amazing teacher here, that he will always run to, when times are difficult.
One he adores and will just sit and talk to.
She got him through the unexpected cancer battle and has opened her door to help him through anything in the future.
HUGE for a pubescent boy.
But he still talks regularly about and to her, through playtime etc.
You, new teacher, may need to look after him emotionally during school hours and that may be a task we need you to step up to.
Just warning you, because we all have no f'n idea what is around the corner!
But as always......
we smile
we laugh
we joke
we live with sarcasm
AND most importantly,
WE stick up for each other.
Cheers to 2018 friends xxx
Almost Midnight here, so just a quick post!
We are so busy with a million things happening or about to happen.
Everyone here is the best they have been in a very long time.
Our baby, Tom, entered Grade 6 this week.
I was almost as emotional as Prep!
He has an amazing group of kids around him (and parents!).
Amelia has entered a new grade.
Year 9.
New teacher and different friends.
The first new teacher in 4 years!
I am so incredibly proud to say, after all the anxiety over the holidays, that she has totally smashed it!
She is coming home happy and excited and full of stories.
Amelia is honestly taking life by the horns lately (please tell me that is a saying, because Scott tells me that I get them all wrong!- I am the person to unknowingly make up words to songs and common sayings!).
Amelia is really trying her best and using humour and sarcasm to get her through many situations lately. Thankfully school is genuine!
(I wonder who taught her that!).
One massive thing is that we are about to have "paid carers" enter our home.
"Well the government has saved lots of money on your family" one person at Amelia's school said.
Call me stupid (just looked up the meaning of Martyr and did not like it!) but I have always held the belief "I am her mother and I will look after her".
I realise now that she should have been introduced to people helping us earlier.
BUT I am not upset at myself for believing she was my responsibility only.
Maybe that has helped the close connection amongst all of us in the family.
All of us helping and learning compassion by helping one another.
My back and hip no longer want to be alone in this battle.
They have turned against me and gone to an agency.
I have spent the past 6 months preparing Amelia for this change and she is now saying "I AM SICK OF YOU ALL AND NEED NEW PEOPLE SPENDING TIME WITH ME".
Or yelling it.
I think I (or my hips and back) have prepared her well.
The Government have given me a small amount of money to pay someone for now.
MASSIVE.
A massive move for our family.
The hardest part is allowing people to enter our home every 2 days to care for a daughter that is mine.
To observe and judge and think on what is mine.
But I need to get over it.
It is what it is.
Another big thing to happen soon is the NDIS.
It is the new Australian Government disability insurance scheme that Amelia did the very first advertisement for a few years ago.
I cannot possibly describe how HUGE it is.
If I write the plan correctly and connect it to the correct links on their 50 plus pages of links....
I may be able to get her everything we have NEVER been able to afford.
I have done SO much study and need to do 3 times more to get her the best plan possible.
Stuff it up and you will be left with not much.
Have a look at the photo I recently posted on the FB page.
I am aiming for stuff like that.
They want "independence" and " quality of life", I have pages of things she needs.
I have so much that would help Amelia.
I seriously cannot wait.
But we can also only try, because they may say no.........
_______________
But as I said to Tom's new teacher this morning.....
As we finished discussing HIS diabetes....
I have no idea about either of the kids anymore.
I have no idea what may happen with Amelia this year and whether we will end up in hospital or not.
What her diagnosis or prognosis may be, after previous years.
I have no idea whether we will be in a dangerous life situation "health wise" or not.
BUT please rest assure, I have the most amazing village around us to look after Tom outside of school hours.
The most amazing people that adore and love and discipline him as much as we do.
There is also ONE amazing teacher here, that he will always run to, when times are difficult.
One he adores and will just sit and talk to.
She got him through the unexpected cancer battle and has opened her door to help him through anything in the future.
HUGE for a pubescent boy.
But he still talks regularly about and to her, through playtime etc.
You, new teacher, may need to look after him emotionally during school hours and that may be a task we need you to step up to.
Just warning you, because we all have no f'n idea what is around the corner!
But as always......
we smile
we laugh
we joke
we live with sarcasm
AND most importantly,
WE stick up for each other.
Cheers to 2018 friends xxx
Thursday, 11 January 2018
January 2018
(edited A LOT from a few days ago)
Hi Guys,
I have been writing on here frequently since 2010 and it is always a release and an explanation of many things.
It may be something expected about "our life"......
My life.
It may be a 'thank you' or message of appreciation.
It may be a story about an adventure, visitor or holiday.
Many of you have said that I have helped you through difficult times by showing that "we all go through that"......
That "you are all so seriously normal in thinking and experiencing that"......
After 10 plus years of special needs, I am happily insane.
Many of you read this to laugh at the insanity, add to your "see, she is nuts" and "we better keep an eye on her".
But I also have "She is doing well" part.
2018 may be my year.
Tom and Scott believe it may be their year too.
I am happy with the adjustments our family has made over the years to cater for the realities and differences.
I am happy with the to and fro of life in this house.
One child in this house is dying faster than any of us (if you go by what is already known).
Hospital.
Another new Diagnosis.
You have read it all.
Change and development happens with any family.
The to and fro of age and change.
Ours is just different to "the norm".
The best analysis of myself has occurred over the last 12 months.
Of myself, by myself.
(biggest would be post diagnosis)
The biggest analysis of ALL in this house has happened over the last 12 months for each individual.
We all talked like we always have, but you can see change, progress, happiness and positivity in that talk.
When you are young and growing and changing...... you lose and gain many individuals along the way.
Some stay with you when you think they are long gone, courtesy of social media.
They are sometimes the ones to keep you alive and carrying on.
Little messages or visits are like a warm hug.
That is something I have often struggled with on here though.....the ones lost.
The mistakes made and nasty words spoken.
But I finally realise I can no longer blame myself for losing some or analyse their decisions or behaviour anymore.
I am now so far removed from the person I was in my 20's and early 30's.
That person was bubbly, friendly and always helping others.
She had a career she was passionate about and loved.
She suffered badly from depression, anxiety and low self esteem.
In the last 10 years that has changed and she has morphed into a new person.
The new person cannot be described properly yet, because it has not been learnt about enough yet to describe.
I honestly feel like I have began the very first chapter of a whole new book.
Whether it is because of quitting smoking, recovering from the cancer scare and subsequent PTSD, I don't know.
I feel strong and confident and proud of where I am at emotionally.
Tom has finally "pulled his head in" for general behaviour.
(many of you have heard me say this to him over the years!).
He is finally a role model and someone to be proud of.
I love hearing other peoples stories about him and I love witnessing his amazing words and actions myself.
(he can still be a real little shit though!)
I am genuinely excited about watching him grow and develop more.
Amelia is finally spreading those damn bloody wings and speaking her mind!
She is suddenly very sassy and telling you what she really thinks when she feels comfortable!
Doctors have taken notice and are speaking to her about "her concerns" before me now.
She is funny, sarcastic and full of questions.
Amelia has developed an opinion that is becoming strong and confident about herself that I was worried would never come.
When doctors appointments, tests or ED are now mentioned she immediately jumps to the positives (the food she can get, people she will see, facilities she can access as an inpatient).
Amelia has a plan on marriage, children and her future career....
Who knows the future?!
BUT I am never going to avoid the judgement and jealousy from others.
Everyone lives different lives, thinks differently.
If you talk and if you talk personal on social media it eventually comes back to bite you, even in conversations with close friends.
But I am ok with that.
I can walk away confident with the decisions we have made to save our sanity.
I have THE most amazing children and husband EVER.
I can blog sad forever but not happy usually!
But I will try.
We have Amelia, Scott, Tom and I NOW.
How many more people need to comment how happy our house is?!?!
A neighbour commented on the seriously pathetic reunion last week when Tom and Scott returned from their "work week" in Sydney.
The car roared down the driveway and Scott and Tom flew out of the car towards the front door before the car barely stopped.
She said "my hubby and I shed a tear".
Inside we were all seriously hugging and jumping up and down.
Pathetic!!!!!!!!
We cannot whinge when we have so much love.
LOVE is worth so much more than anything else in your one life.
Anyway....
No Regrets at the end is constant and we have so many people on board to make it happen.
All of you would even say there is absolutely no way it hasn't happened yet.
Look at the list in the past 10 years!
Everything from Disneyland, meeting a real mermaid and being on a real commercial.
Amelia will comment the most heartfelt, tear jerking moments though.
The moments with those she loves dearly and is still getting to know.
I must video her comments on those people.
I hear comments regularly that would dumbfound you.
It is NOT the big moments we all celebrate.
It is the genuine moments.
No money or plans needed.
A girlfriend recently looked up Amelia's birthdate/starsign.
She had looked up everyone else's at the table and I was secretly scared of Amelia's because of what I have experienced in previous years........
Amelia's said...
Be very aware of your friendly and empathetic nature.
It influences others strongly in a great or negative way.
Be careful of what you say or do around others.
SO TRUE.
For so long I have seen her change people.
The man at the shopping centre 5 years ago that suddenly held her head and began humming.
and so much more.....
It freaks me out writing it!
She expels a feeling to others!
Amelia is entering a new year .
Level 9 and new teachers.
Tom is entering a new year.
Level 6 and teacher.
2018 we await you.
Frequent FB update awaits.
xxx
Hi Guys,
I have been writing on here frequently since 2010 and it is always a release and an explanation of many things.
It may be something expected about "our life"......
My life.
It may be a 'thank you' or message of appreciation.
It may be a story about an adventure, visitor or holiday.
Many of you have said that I have helped you through difficult times by showing that "we all go through that"......
That "you are all so seriously normal in thinking and experiencing that"......
After 10 plus years of special needs, I am happily insane.
Many of you read this to laugh at the insanity, add to your "see, she is nuts" and "we better keep an eye on her".
But I also have "She is doing well" part.
2018 may be my year.
Tom and Scott believe it may be their year too.
I am happy with the adjustments our family has made over the years to cater for the realities and differences.
I am happy with the to and fro of life in this house.
One child in this house is dying faster than any of us (if you go by what is already known).
Hospital.
Another new Diagnosis.
You have read it all.
Change and development happens with any family.
The to and fro of age and change.
Ours is just different to "the norm".
The best analysis of myself has occurred over the last 12 months.
Of myself, by myself.
(biggest would be post diagnosis)
The biggest analysis of ALL in this house has happened over the last 12 months for each individual.
We all talked like we always have, but you can see change, progress, happiness and positivity in that talk.
When you are young and growing and changing...... you lose and gain many individuals along the way.
Some stay with you when you think they are long gone, courtesy of social media.
They are sometimes the ones to keep you alive and carrying on.
Little messages or visits are like a warm hug.
That is something I have often struggled with on here though.....the ones lost.
The mistakes made and nasty words spoken.
But I finally realise I can no longer blame myself for losing some or analyse their decisions or behaviour anymore.
I am now so far removed from the person I was in my 20's and early 30's.
That person was bubbly, friendly and always helping others.
She had a career she was passionate about and loved.
She suffered badly from depression, anxiety and low self esteem.
In the last 10 years that has changed and she has morphed into a new person.
The new person cannot be described properly yet, because it has not been learnt about enough yet to describe.
I honestly feel like I have began the very first chapter of a whole new book.
Whether it is because of quitting smoking, recovering from the cancer scare and subsequent PTSD, I don't know.
I feel strong and confident and proud of where I am at emotionally.
Tom has finally "pulled his head in" for general behaviour.
(many of you have heard me say this to him over the years!).
He is finally a role model and someone to be proud of.
I love hearing other peoples stories about him and I love witnessing his amazing words and actions myself.
(he can still be a real little shit though!)
I am genuinely excited about watching him grow and develop more.
Amelia is finally spreading those damn bloody wings and speaking her mind!
She is suddenly very sassy and telling you what she really thinks when she feels comfortable!
Doctors have taken notice and are speaking to her about "her concerns" before me now.
She is funny, sarcastic and full of questions.
Amelia has developed an opinion that is becoming strong and confident about herself that I was worried would never come.
When doctors appointments, tests or ED are now mentioned she immediately jumps to the positives (the food she can get, people she will see, facilities she can access as an inpatient).
Amelia has a plan on marriage, children and her future career....
Who knows the future?!
BUT I am never going to avoid the judgement and jealousy from others.
Everyone lives different lives, thinks differently.
If you talk and if you talk personal on social media it eventually comes back to bite you, even in conversations with close friends.
But I am ok with that.
I can walk away confident with the decisions we have made to save our sanity.
I have THE most amazing children and husband EVER.
I can blog sad forever but not happy usually!
But I will try.
We have Amelia, Scott, Tom and I NOW.
How many more people need to comment how happy our house is?!?!
A neighbour commented on the seriously pathetic reunion last week when Tom and Scott returned from their "work week" in Sydney.
The car roared down the driveway and Scott and Tom flew out of the car towards the front door before the car barely stopped.
She said "my hubby and I shed a tear".
Inside we were all seriously hugging and jumping up and down.
Pathetic!!!!!!!!
We cannot whinge when we have so much love.
LOVE is worth so much more than anything else in your one life.
Anyway....
No Regrets at the end is constant and we have so many people on board to make it happen.
All of you would even say there is absolutely no way it hasn't happened yet.
Look at the list in the past 10 years!
Everything from Disneyland, meeting a real mermaid and being on a real commercial.
Amelia will comment the most heartfelt, tear jerking moments though.
The moments with those she loves dearly and is still getting to know.
I must video her comments on those people.
I hear comments regularly that would dumbfound you.
It is NOT the big moments we all celebrate.
It is the genuine moments.
No money or plans needed.
A girlfriend recently looked up Amelia's birthdate/starsign.
She had looked up everyone else's at the table and I was secretly scared of Amelia's because of what I have experienced in previous years........
Amelia's said...
Be very aware of your friendly and empathetic nature.
It influences others strongly in a great or negative way.
Be careful of what you say or do around others.
SO TRUE.
For so long I have seen her change people.
The man at the shopping centre 5 years ago that suddenly held her head and began humming.
and so much more.....
It freaks me out writing it!
She expels a feeling to others!
Amelia is entering a new year .
Level 9 and new teachers.
Tom is entering a new year.
Level 6 and teacher.
2018 we await you.
Frequent FB update awaits.
xxx
Monday, 1 January 2018
Wonder - The Movie
Happy New Year 2018 friends!
Today Amelia wanted to go and see "Wonder" at the movies as one of our final adventures before the boys return from Scott's work trip to Sydney.
I had no issues attending and knew I would probably cry.....
From the very first second, my life started playing out before my eyes....
Quite intently and precise too.
It was like an "oh shit" moment where you look around and worry that someone is spying on you.
(This freaked me out almost as much as the hypnotists ability to remove smoking from my mind).
I say MY above because as the mother spoke, it is everything I have ever thought or experienced.
I say MY because I watched everything my family has experienced in close emotional detail.
Every thought, discussion, consoling moment.
Every personality in the family of the film matched mine almost perfectly!
The comment "My mum gave away her life to devote it to him"......
I silently cried throughout the whole movie.
Every new scene was exactly us.
As we left an elderly couple commented directly to me "great movie".
I lost it in front of them and was able to mutter "Yes. A little too close to home though".
I pushed Amelia quickly to the car.
I was just not prepared for everything we have gone through to be portrayed so perfectly on screen.
The fear, emotions, social skills, communication and even humour.
All of us was all there.
Hours later I was able to laugh a little when I thought of my opinion of the movie trailer beforehand...
Of what I was going to see.
Inspirational.
Amazing.
I laughed that there are so many of us that already live every single minute of what was portrayed on screen.
We experience all that and more.
Children like Auggie are everywhere and I get to see them everyday at Amelia's school.
So if you want to see "my families life" and so many others, go see Wonder.
Finally.....
I know you all want to know Amelia's thoughts on the movie.
Her exact words were "I loved it. I understood HIM. I did not cry because I know that life. And Auggie is inspirational".
Oh Amelia.
Many of my tears were because I felt like I was watching your life on screen and the effect on everyone around you.
I felt like I was also watching, not only how you have changed and shaped Dad, Tom and I....
But so many others.
xxx
Today Amelia wanted to go and see "Wonder" at the movies as one of our final adventures before the boys return from Scott's work trip to Sydney.
I had no issues attending and knew I would probably cry.....
From the very first second, my life started playing out before my eyes....
Quite intently and precise too.
It was like an "oh shit" moment where you look around and worry that someone is spying on you.
(This freaked me out almost as much as the hypnotists ability to remove smoking from my mind).
I say MY above because as the mother spoke, it is everything I have ever thought or experienced.
I say MY because I watched everything my family has experienced in close emotional detail.
Every thought, discussion, consoling moment.
Every personality in the family of the film matched mine almost perfectly!
The comment "My mum gave away her life to devote it to him"......
I silently cried throughout the whole movie.
Every new scene was exactly us.
As we left an elderly couple commented directly to me "great movie".
I lost it in front of them and was able to mutter "Yes. A little too close to home though".
I pushed Amelia quickly to the car.
I was just not prepared for everything we have gone through to be portrayed so perfectly on screen.
The fear, emotions, social skills, communication and even humour.
All of us was all there.
Hours later I was able to laugh a little when I thought of my opinion of the movie trailer beforehand...
Of what I was going to see.
Inspirational.
Amazing.
I laughed that there are so many of us that already live every single minute of what was portrayed on screen.
We experience all that and more.
Children like Auggie are everywhere and I get to see them everyday at Amelia's school.
So if you want to see "my families life" and so many others, go see Wonder.
Finally.....
I know you all want to know Amelia's thoughts on the movie.
Her exact words were "I loved it. I understood HIM. I did not cry because I know that life. And Auggie is inspirational".
Oh Amelia.
Many of my tears were because I felt like I was watching your life on screen and the effect on everyone around you.
I felt like I was also watching, not only how you have changed and shaped Dad, Tom and I....
But so many others.
xxx
Tuesday, 26 December 2017
Cigarettes
Hello dear friends,
Just a quick post here because this little chicken is exhausted!!!!
(edit- seemed to have taken 90 minutes so far!)
Most of Amelia's and Tom's Christmas presents are clothing, bedding and shoes that parents would normally buy throughout the year.
I would normally buy it anyway, so why not get it at Christmas!
We just give it to them at Christmas (and it is more name brand than normal!)
Today was wash day and get them put away into wardrobes amongst the general Christmas clean up!!!!
This is just a really quick post to thank you all for everything.
Seriously thankyou for the support and love.
Thank you for putting up with all the crap we have been dealt with (and my verbal crap) and supporting us in all that comes next.
A massive HUG to those that that have been through the stress, pain, heartache and
"FUCK YOU".
It will continue coming and the more we smile and laugh, the more amazing life will be.
One life.
And the more "FUCK YOU" because it will continue.
Tom and Amelia have both shown Scott and I in the last 18 months that anything and everything can be turned into a positive.
We can work through it and add any medication, appointment and hospital stay to our regime!
Someone recently came to our house for about the fourth time for a visit.
She said "I never knew there would be so much laughter, sarcasm and affection here.
I thought it would be really sad".
(She is obviously nuts).
Amanda (me) has obviously not shown the paranoid, stressed and crazy part of herself enough yet (no mention of anyone else!).
Anyway...
This Post.
Tomorrow marks 7 weeks of post cigarette smoking.
NEVER EVER ACHIEVED.
HUGE
MASSIVE
We have tried to stop this addiction too many times to mention
(this addiction has been compared to heroin!)
our attempts? sooooooooooo many times that it was a joke in the amount counted.
I think I got to 1039 attempts!
Patches failed.
Champix failed.
Cold turkey lasted 3 hours for Amanda - me!!!!!
(confusion occurring on who, when, why and how).
I am not going to list everything that has happened in our lives to stop smoking!!!
You all know the crappy list.
Going outside to "calm down, leave the hospital, hang up the phone from a doctor, receive a pathology result, start the day etc" ...........
was a smoke.
WAS A SMOKE.
A child that you gave birth to is suddenly terminal at 7 years old in December 2010.
When you have no F'N idea.
Smoke.
Suddenly another is T1 Diabetes on Christmas Eve 2013.
When you have no F'N idea.
Smoke.
The final straw of smoking was the cost.
SO MUCH money.
$43 a packet of smokes of 40!
I know many of you need to recover from that comment.
But it is an addiction that many of you would never understand unless you lived it.
In the last 2 years it has risen in cost dramatically. Stupidly.
For those past and present smokers, remember when it was $7:50 for 40?
It is now $43.00.
Another final straw for us was also the cough and breathing and pain from yourself, in the chest laying down.
Overnight thinking you were having a heart attack.
OMG the slight pain and breathing.
38 years old and having trouble breathing?
The final straw was my own dad on his hands and knees asking "who is going to look after the kids when you are gone?".
"I can't". he said.
He is pretty much the only one.
My dad has been the only regular constant.
His own body is shutting down.
Someone who is there every single week for us.
EVERY SINGLE WEEK.
He can't care for them anymore in his 70's.
Scott was 40 smokes a day.
I was about 20.
The money.
The debt.
"I am sorry Amelia and Tom , we cant afford what you want.
We have no money.................."
Is what we regularly said.
"I just need to stop at the shops for a $43 pack of smokes though on the way home"
Silently stressed.
This is what we regularly said and had no idea how we felt.
SERIOUSLY?
How fucked is that?!
I don't think I need to say anymore.
But maybe we do.
Maybe we did not and do not know how to stop.
We had tried and could not seriously function when we tried.
The racey mind and vision.
We would last like 2 hours and be in the car to buy some.
If you do not understand cigarette, heroin or ice withdrawn, you would not understand this.
It is shit.
And how cigarettes is legal, we have no idea!
We experienced serious withdrawal vision of....
Anger.
Blurred vision.
Agitation.
Crawled up in a corner........
The withdrawal from heroin or ice is exactly the same.
How is this nicotine shit legal?
We were so incredibly disgusted in ourselves.
But we did not know how to stop.
It was so upsetting!
After 28 years, cigarettes were equal with sleep and food in our daily requirements.
28 years of all day and everyday.
The budget included smokes with the so called "essentials".
We are now so ashamed.
It got us though Amelia's "terminal" diagnosis (thank you Kim for letting me have one or 50) and Tom's diabetes.
I am that upset now, SERIOUSLY, it is so embarrassing.
It was our food.
But then this one man changed everything.
The Hypnotist we booked............
A man that does stage shows, travels to Las Vegas and does AFL Club parties etc
7 weeks post hypnotism.
We feel like we are part of some sci fi movie where someone has opened our brain and removed the smoking component.
It is still hard.
But 85% less hard than normal.
We still fight with withdrawl, but it is minor compared to the other times.
It is actually easy compared to the other times.
But now you just eat or walk the dog or go to bed to battle with the withdrawls it is SO minor.
I am now the size of a house, BUT for the first time in FOREVER I don't give a f'n shit.
I know that weight can be lost, but smoking felt like it would never happen.
NEVER.
And it has.
IT SERIOUSLY HAS.
We have actually quit smoking.
The kids are still sceptical about us going outside, but Scott and I are like "you have no idea. It is like it has been taken out of our thinking!".
They will not understand for a while, because it is all that they have ever known!
Another finally.......
Tom's school report says he is 12- 18 months months ahead academically in reading, writing and maths areas.
We actually no longer care about this for his future.
And I mean that seriously.
Many people at his school (past and present) have pointed out (or messaged and emailed me) many other assets that they recognise in Tom that will be his assets in life recently.
Past and present teachers that want to add to the so called "portfolio" I am learning about.
It has been incredible and so emotional.
As everyone who knows me knows, I have read messages and letters that made me literally shake.
This child (Tom) caused SOOOOOOO much trouble earlier on in his life.
But we tried our best to stay strict and follow through with discipline.
I spent years holding his bedroom closed for timeout, even while people visited.
I took him home from birthday parties when he behaved badly.
The worst lasted 6 years.
I remember asking Scott "what does it mean if you love your own child, but don't like them as a person?".
(So many of you struggle on here with your own boys. You have messaged me or told me.
Please screen shot this or write it down. Look back on Tom and what has changed.
I honestly do not believe it was us. It was just him needing direction, structure, boundaries and "missing out").
I so incredibly appreciate all of the messages and emails.
He is starting to become what we spent 6 years creating.
Everyone seems to believe he will be so incredibly driven and determined that he will be whatever he wants to be.
He will be kind and caring and defend those being hassled.
(He already is from what I am being told and messaged).
I have received so many messages from parents this year complimenting him in various situations defending those being picked on.
"STOP" he apparently yelled and glared at bullies in front of everyone, witnessed by students, staff and parents this year.
I have actually asked staff and his friends and they described this.
Who could possibly ask for anything more?
Amelia is going to her first respite weekend in February.
It began as 2 kids from school that can verbally talk.
Amelia asked for me to approach the parents of 2 more children to come with them.
They have no communication skills.
One talks through a communication device as best as he can and the other cannot talk at all.
For the one that cant talk at all, I approached his mum and told her Amelia's suggestion for the weekend away.
"What?
Are you serious? "
she asked.
"No one has ever asked to be with him and socialise with him.'
He is 15 and no one wants to be with him".
Then the mum began crying.
Well Amelia has asked for him to join her.
She just asked because she wants him there.
Imagine that.
As always I wonder, why have I been GIFTED these 2 kids.
I regularly feel like the postman or courier for Amelia and Tom.
But then I see other people and draw from their strength.
Is that my role in life or is it my energy for my personal weakness?
My role for the person that I needed to be?!
Very long "quick" message.
Sweet Dreams xxx
Love to all
Just a quick post here because this little chicken is exhausted!!!!
(edit- seemed to have taken 90 minutes so far!)
Most of Amelia's and Tom's Christmas presents are clothing, bedding and shoes that parents would normally buy throughout the year.
I would normally buy it anyway, so why not get it at Christmas!
We just give it to them at Christmas (and it is more name brand than normal!)
Today was wash day and get them put away into wardrobes amongst the general Christmas clean up!!!!
This is just a really quick post to thank you all for everything.
Seriously thankyou for the support and love.
Thank you for putting up with all the crap we have been dealt with (and my verbal crap) and supporting us in all that comes next.
A massive HUG to those that that have been through the stress, pain, heartache and
"FUCK YOU".
It will continue coming and the more we smile and laugh, the more amazing life will be.
One life.
And the more "FUCK YOU" because it will continue.
Tom and Amelia have both shown Scott and I in the last 18 months that anything and everything can be turned into a positive.
We can work through it and add any medication, appointment and hospital stay to our regime!
Someone recently came to our house for about the fourth time for a visit.
She said "I never knew there would be so much laughter, sarcasm and affection here.
I thought it would be really sad".
(She is obviously nuts).
Amanda (me) has obviously not shown the paranoid, stressed and crazy part of herself enough yet (no mention of anyone else!).
Anyway...
This Post.
Tomorrow marks 7 weeks of post cigarette smoking.
NEVER EVER ACHIEVED.
HUGE
MASSIVE
We have tried to stop this addiction too many times to mention
(this addiction has been compared to heroin!)
our attempts? sooooooooooo many times that it was a joke in the amount counted.
I think I got to 1039 attempts!
Patches failed.
Champix failed.
Cold turkey lasted 3 hours for Amanda - me!!!!!
(confusion occurring on who, when, why and how).
I am not going to list everything that has happened in our lives to stop smoking!!!
You all know the crappy list.
Going outside to "calm down, leave the hospital, hang up the phone from a doctor, receive a pathology result, start the day etc" ...........
was a smoke.
WAS A SMOKE.
A child that you gave birth to is suddenly terminal at 7 years old in December 2010.
When you have no F'N idea.
Smoke.
Suddenly another is T1 Diabetes on Christmas Eve 2013.
When you have no F'N idea.
Smoke.
The final straw of smoking was the cost.
SO MUCH money.
$43 a packet of smokes of 40!
I know many of you need to recover from that comment.
But it is an addiction that many of you would never understand unless you lived it.
In the last 2 years it has risen in cost dramatically. Stupidly.
For those past and present smokers, remember when it was $7:50 for 40?
It is now $43.00.
Another final straw for us was also the cough and breathing and pain from yourself, in the chest laying down.
Overnight thinking you were having a heart attack.
OMG the slight pain and breathing.
38 years old and having trouble breathing?
The final straw was my own dad on his hands and knees asking "who is going to look after the kids when you are gone?".
"I can't". he said.
He is pretty much the only one.
My dad has been the only regular constant.
His own body is shutting down.
Someone who is there every single week for us.
EVERY SINGLE WEEK.
He can't care for them anymore in his 70's.
Scott was 40 smokes a day.
I was about 20.
The money.
The debt.
"I am sorry Amelia and Tom , we cant afford what you want.
We have no money.................."
Is what we regularly said.
"I just need to stop at the shops for a $43 pack of smokes though on the way home"
Silently stressed.
This is what we regularly said and had no idea how we felt.
SERIOUSLY?
How fucked is that?!
I don't think I need to say anymore.
But maybe we do.
Maybe we did not and do not know how to stop.
We had tried and could not seriously function when we tried.
The racey mind and vision.
We would last like 2 hours and be in the car to buy some.
If you do not understand cigarette, heroin or ice withdrawn, you would not understand this.
It is shit.
And how cigarettes is legal, we have no idea!
We experienced serious withdrawal vision of....
Anger.
Blurred vision.
Agitation.
Crawled up in a corner........
The withdrawal from heroin or ice is exactly the same.
How is this nicotine shit legal?
We were so incredibly disgusted in ourselves.
But we did not know how to stop.
It was so upsetting!
After 28 years, cigarettes were equal with sleep and food in our daily requirements.
28 years of all day and everyday.
The budget included smokes with the so called "essentials".
We are now so ashamed.
It got us though Amelia's "terminal" diagnosis (thank you Kim for letting me have one or 50) and Tom's diabetes.
I am that upset now, SERIOUSLY, it is so embarrassing.
It was our food.
But then this one man changed everything.
The Hypnotist we booked............
A man that does stage shows, travels to Las Vegas and does AFL Club parties etc
7 weeks post hypnotism.
We feel like we are part of some sci fi movie where someone has opened our brain and removed the smoking component.
It is still hard.
But 85% less hard than normal.
We still fight with withdrawl, but it is minor compared to the other times.
It is actually easy compared to the other times.
But now you just eat or walk the dog or go to bed to battle with the withdrawls it is SO minor.
I am now the size of a house, BUT for the first time in FOREVER I don't give a f'n shit.
I know that weight can be lost, but smoking felt like it would never happen.
NEVER.
And it has.
IT SERIOUSLY HAS.
We have actually quit smoking.
The kids are still sceptical about us going outside, but Scott and I are like "you have no idea. It is like it has been taken out of our thinking!".
They will not understand for a while, because it is all that they have ever known!
Another finally.......
Tom's school report says he is 12- 18 months months ahead academically in reading, writing and maths areas.
We actually no longer care about this for his future.
And I mean that seriously.
Many people at his school (past and present) have pointed out (or messaged and emailed me) many other assets that they recognise in Tom that will be his assets in life recently.
Past and present teachers that want to add to the so called "portfolio" I am learning about.
It has been incredible and so emotional.
As everyone who knows me knows, I have read messages and letters that made me literally shake.
This child (Tom) caused SOOOOOOO much trouble earlier on in his life.
But we tried our best to stay strict and follow through with discipline.
I spent years holding his bedroom closed for timeout, even while people visited.
I took him home from birthday parties when he behaved badly.
The worst lasted 6 years.
I remember asking Scott "what does it mean if you love your own child, but don't like them as a person?".
(So many of you struggle on here with your own boys. You have messaged me or told me.
Please screen shot this or write it down. Look back on Tom and what has changed.
I honestly do not believe it was us. It was just him needing direction, structure, boundaries and "missing out").
I so incredibly appreciate all of the messages and emails.
He is starting to become what we spent 6 years creating.
Everyone seems to believe he will be so incredibly driven and determined that he will be whatever he wants to be.
He will be kind and caring and defend those being hassled.
(He already is from what I am being told and messaged).
I have received so many messages from parents this year complimenting him in various situations defending those being picked on.
"STOP" he apparently yelled and glared at bullies in front of everyone, witnessed by students, staff and parents this year.
I have actually asked staff and his friends and they described this.
Who could possibly ask for anything more?
Amelia is going to her first respite weekend in February.
It began as 2 kids from school that can verbally talk.
Amelia asked for me to approach the parents of 2 more children to come with them.
They have no communication skills.
One talks through a communication device as best as he can and the other cannot talk at all.
For the one that cant talk at all, I approached his mum and told her Amelia's suggestion for the weekend away.
"What?
Are you serious? "
she asked.
"No one has ever asked to be with him and socialise with him.'
He is 15 and no one wants to be with him".
Then the mum began crying.
Well Amelia has asked for him to join her.
She just asked because she wants him there.
Imagine that.
As always I wonder, why have I been GIFTED these 2 kids.
I regularly feel like the postman or courier for Amelia and Tom.
But then I see other people and draw from their strength.
Is that my role in life or is it my energy for my personal weakness?
My role for the person that I needed to be?!
Very long "quick" message.
Sweet Dreams xxx
Love to all
Sunday, 24 December 2017
Merry Christmas 2017
Hello dear friends,
Merry Christmas!
I am so over listing my pain and sorrow of virtually caring for a child in constant palliative care.
No one wants to hear it and I know longer want to write it.
Amelia is SO much more and so am I.
No one will ever understand and I would never expect them to.
From now it will be facts and positives only!
ENJOY!!!!!!!
It is after midnight in this little house of ours and I want to wish everyone an awesome day tomorrow......................................................
today?!
It has once again been a "topsy turvy" year in this house, but as we all now probably realise,
it always will be.
7 years ago today we were mourning the diagnosis of a terminally ill daughter (aged 7).
Still alive aged 14 now!!!!!!!!!!!!!!!!!!!!!!
DOUBLE the time.
4 years ago today we were living in hospital with the diagnosis of a son with type 1 diabetes (aged 7).
Still as active and loud as ever now!!!!!!!!!!!!!!!!
The medication and food diary becomes routine for both kids!!!!
EVERY year Amelia plans Christmas Eve and Christmas Day as soon as her Birthday finishes.......
In JUNE!!!!!!
We have completed her "list of requirements for Christmas" to her happiness..... I think so far this year!
First is Santa's list.
Next is Santa's runway!
Santa's runway was quite extravagant this year.
It involved 3 houses with google map drawings across the road.
(arrows, please go here next; pictures and offerings of carrots...... quite high tech).
Unfortunately due to circumstances out of our control this year, Tom found out about Santa and his true magic.
None of us were near the stage yet (especially Tom), but it happened.
After 48 hours (and constant questions of "EXPLAIN?!") our amazing neighbours looked after Amelia while we explained "STUFF".
After 2 days of devastation, Tom did what he always he does.........
He turned it into a positive.
He would help us be Santa.
Be SANTA!
His ideas and his excitement was inspirational.
Tom has insisted on wrapping ALL of Amelia's Santa presents.
At 10pm tonight he was helping build the swing set across the road with massive enthusiasm for kids 6 years and younger!!
He insisted on helping me grate the carrots and leave the reindeer poo at all the neighbours driveways (something I have done for years).
"Teach me please" he laughed!
So we did it whispering!
But as Scott and I held Amelia's sack open and Tom excitedly threw everything in at 11:30pm,
I really started crying.
I was seriously pathetic!
"Why" they both asked.
"Because this is huge and the end of something special" I said.
"And he is taking it too damn positively!!".
"It is ok. All my friends in class explained it nicely".
"Thank you mum and dad for letting me help you with this.
I now know how much effort you go to.
I know this is special and important for future memories for you and me about Amelia".
Tom said.
(I seriously do not make this shit up. Tom will read this one day and verify).
Sometimes what he says sounds so damn rehearsed, but it is genuinely him.
To be so sad and devastated and then to be so positive!
Finally....
No one knows except 5 people....
Not even Tom...........
RCH want Amelia "swabbed" for an antibiotic drip for an infection under the skin.
It was suggested in a call on Friday 22/12/17.
This would mean a stay in hospital.
"Not Christmas" I said " PLEASE".
"It would destroy her. Please wait till next week".
Thank goodness they listened.
I am just on watch for increased tiredness and major loss of appetite and fever.
(mastitis like affect).
We are taking a general oral anti while we wait.
We are now seeing them 28/12/17.
We are going to SO enjoy watching Amelia open the presents from Tom and Santa tomorrow and cross everything we do not need to move to a ward next Thursday.
Amelia has waited 6 months for today!!!!!!!!!!!
MERRY CHRISTMAS EVERYONE
PLEASE appreciate every single day.
LOVE to you every single one of you.
This is probably my Grandpa's last Christmas Day.
But as he said
"I have had 91 of them.
I have lived my life.....
Amelia is only 14".
xxx
Merry Christmas!
I am so over listing my pain and sorrow of virtually caring for a child in constant palliative care.
No one wants to hear it and I know longer want to write it.
Amelia is SO much more and so am I.
No one will ever understand and I would never expect them to.
From now it will be facts and positives only!
ENJOY!!!!!!!
It is after midnight in this little house of ours and I want to wish everyone an awesome day tomorrow......................................................
today?!
It has once again been a "topsy turvy" year in this house, but as we all now probably realise,
it always will be.
7 years ago today we were mourning the diagnosis of a terminally ill daughter (aged 7).
Still alive aged 14 now!!!!!!!!!!!!!!!!!!!!!!
DOUBLE the time.
4 years ago today we were living in hospital with the diagnosis of a son with type 1 diabetes (aged 7).
Still as active and loud as ever now!!!!!!!!!!!!!!!!
The medication and food diary becomes routine for both kids!!!!
EVERY year Amelia plans Christmas Eve and Christmas Day as soon as her Birthday finishes.......
In JUNE!!!!!!
We have completed her "list of requirements for Christmas" to her happiness..... I think so far this year!
First is Santa's list.
Next is Santa's runway!
Santa's runway was quite extravagant this year.
It involved 3 houses with google map drawings across the road.
(arrows, please go here next; pictures and offerings of carrots...... quite high tech).
Unfortunately due to circumstances out of our control this year, Tom found out about Santa and his true magic.
None of us were near the stage yet (especially Tom), but it happened.
After 48 hours (and constant questions of "EXPLAIN?!") our amazing neighbours looked after Amelia while we explained "STUFF".
After 2 days of devastation, Tom did what he always he does.........
He turned it into a positive.
He would help us be Santa.
Be SANTA!
His ideas and his excitement was inspirational.
Tom has insisted on wrapping ALL of Amelia's Santa presents.
At 10pm tonight he was helping build the swing set across the road with massive enthusiasm for kids 6 years and younger!!
He insisted on helping me grate the carrots and leave the reindeer poo at all the neighbours driveways (something I have done for years).
"Teach me please" he laughed!
So we did it whispering!
But as Scott and I held Amelia's sack open and Tom excitedly threw everything in at 11:30pm,
I really started crying.
I was seriously pathetic!
"Why" they both asked.
"Because this is huge and the end of something special" I said.
"And he is taking it too damn positively!!".
"It is ok. All my friends in class explained it nicely".
"Thank you mum and dad for letting me help you with this.
I now know how much effort you go to.
I know this is special and important for future memories for you and me about Amelia".
Tom said.
(I seriously do not make this shit up. Tom will read this one day and verify).
Sometimes what he says sounds so damn rehearsed, but it is genuinely him.
To be so sad and devastated and then to be so positive!
Finally....
No one knows except 5 people....
Not even Tom...........
RCH want Amelia "swabbed" for an antibiotic drip for an infection under the skin.
It was suggested in a call on Friday 22/12/17.
This would mean a stay in hospital.
"Not Christmas" I said " PLEASE".
"It would destroy her. Please wait till next week".
Thank goodness they listened.
I am just on watch for increased tiredness and major loss of appetite and fever.
(mastitis like affect).
We are taking a general oral anti while we wait.
We are now seeing them 28/12/17.
We are going to SO enjoy watching Amelia open the presents from Tom and Santa tomorrow and cross everything we do not need to move to a ward next Thursday.
Amelia has waited 6 months for today!!!!!!!!!!!
MERRY CHRISTMAS EVERYONE
PLEASE appreciate every single day.
LOVE to you every single one of you.
This is probably my Grandpa's last Christmas Day.
But as he said
"I have had 91 of them.
I have lived my life.....
Amelia is only 14".
xxx
Wednesday, 20 December 2017
Hello Dear Friends,
It is entering the end of 2017 and so many of you have travelled such an emotional journey with us since the beginning...2011.
So many have travelled your own with us.
Emotional to us means...
SAD-
Cerebral Palsy (2006)
Amelia's diagnosis of Ataxia Telangiectasia (2010) and
Ovarian Cancer(2016).
Three of the biggest scares.
(Regularly mentioned "go home and cherish her. We don't know how long she has").
Amelia finding out she is Terminal and the amazing Scott coming in and doing the most magnificent explanation of research and health and "we don't know".......
(If I seriously did not have him........).
Amelia slowly lost the ability to walk during grade 1..........
(many of you saw her at school, walking and playing - being pushed over because it was funny to watch her fall by nasty kids).........
dancing, climbing and running before the walker.
Amelia in AFO's,
then a walking frame and
then a wheelchair as her legs froze as the disease of Ataxia telangiectasia took over.
My torment as a mother feeling like we are in palliative care indefinitely began.......
We still are.
BUT I will have that over anything else.
ABSOFRICKENLUTELY.
To have this precious child here beats any stress, depression, torment and pain.
Even now I feel like I have a toddler constantly needing help.
When will she be taken?
No one knows and can help me with an answer.
But I also DO NOT want an answer.
I only want to know what to avoid.
KEEP HER HEALTHY is all they say.
KEEP HER WALKING so her legs do not go numb......
I now need a new left hip and back fusion in the lower disks.
But it is worth it.
SO incredibly worth it.
KEEP HER WALKING.
Her legs can still walk and are walking tandemly with mine.
Tom dealing with the mental pain and of watching Amelia and knowing the truth so young....
and working through it better than anyone else........
ANYONE ELSE.
Blowing people away with his love for his sister.
He is amazing and is going to be THE most amazing adult.
Is helping us ALL get through.
He is A PAIN IN THE NECK in a million other ways....
BUT the way he is with Amelia, would melt anyone's heart.
To find him feeding Amelia (while I answered a phonecall) when he was 6 would melt the hardest of hearts.
Without me having time to ask.
It now happens regularly.
Tom has continued on this same pathway.
He is supposedly part of the "cool" kids and yet is well known to still stick up for those that are "quirky", "coloured skin" and "different" by yelling "STOP".
(I have collected many, many messages from parents over the years about this).
The kids supposedly know and listen and do STOP.
Proud is not strong enough a word right now.
And Scott leaving the corporate world because of the overall pain and time off needed etc
It is shit and also amazing.
Life is looked upon differently now.
HAPPY-
(Amelia's regular drinking (plain water) has just been take off her).
Next it will be eating.
Her swallowing process is shutting down.
It is the process for her disease.
Horrendous in "quality of life"
(She is a mess about it.).
Amelia's sarcasm and humour and most recently FOUL mood helps greatly.
This one is incredibly hard to describe unless you witness it.
It comes so incredibly out of the blue, we all fall over!
IF you have stuff taken off you (that is normal-eating-etc) you crack it.
You know what is happening.
You absolutely crack it.
- UNDERSTAND.
Disabled people regularly have a "label".
A-T more so.
One where they cannot talk, understand, do what they want or communicate
Amelia's school teaches something SO different.
They teach these kids how to do all of the above.
The commercial on TV we all waited so patiently for a few years ago came.
Melbourne zoo with Howie and Kate Howard.
Disneyland.
Anyone who has ever entered our house.
We have LOVE.
We have PROTECTION.
We hear it regularly - the difference to so many other families and also similar.
(we also have depression, meltdowns and anxiety!).
We have REALITY.
Soooooooo much more to write in the coming days.
Love to you all.
xxx
we will get through this.
Honesty in the coming days xxx
It is entering the end of 2017 and so many of you have travelled such an emotional journey with us since the beginning...2011.
So many have travelled your own with us.
Emotional to us means...
SAD-
Cerebral Palsy (2006)
Amelia's diagnosis of Ataxia Telangiectasia (2010) and
Ovarian Cancer(2016).
Three of the biggest scares.
(Regularly mentioned "go home and cherish her. We don't know how long she has").
Amelia finding out she is Terminal and the amazing Scott coming in and doing the most magnificent explanation of research and health and "we don't know".......
(If I seriously did not have him........).
Amelia slowly lost the ability to walk during grade 1..........
(many of you saw her at school, walking and playing - being pushed over because it was funny to watch her fall by nasty kids).........
dancing, climbing and running before the walker.
Amelia in AFO's,
then a walking frame and
then a wheelchair as her legs froze as the disease of Ataxia telangiectasia took over.
My torment as a mother feeling like we are in palliative care indefinitely began.......
We still are.
BUT I will have that over anything else.
ABSOFRICKENLUTELY.
To have this precious child here beats any stress, depression, torment and pain.
Even now I feel like I have a toddler constantly needing help.
When will she be taken?
No one knows and can help me with an answer.
But I also DO NOT want an answer.
I only want to know what to avoid.
KEEP HER HEALTHY is all they say.
KEEP HER WALKING so her legs do not go numb......
I now need a new left hip and back fusion in the lower disks.
But it is worth it.
SO incredibly worth it.
KEEP HER WALKING.
Her legs can still walk and are walking tandemly with mine.
Tom dealing with the mental pain and of watching Amelia and knowing the truth so young....
and working through it better than anyone else........
ANYONE ELSE.
Blowing people away with his love for his sister.
He is amazing and is going to be THE most amazing adult.
Is helping us ALL get through.
He is A PAIN IN THE NECK in a million other ways....
BUT the way he is with Amelia, would melt anyone's heart.
To find him feeding Amelia (while I answered a phonecall) when he was 6 would melt the hardest of hearts.
Without me having time to ask.
It now happens regularly.
Tom has continued on this same pathway.
He is supposedly part of the "cool" kids and yet is well known to still stick up for those that are "quirky", "coloured skin" and "different" by yelling "STOP".
(I have collected many, many messages from parents over the years about this).
The kids supposedly know and listen and do STOP.
Proud is not strong enough a word right now.
And Scott leaving the corporate world because of the overall pain and time off needed etc
It is shit and also amazing.
Life is looked upon differently now.
HAPPY-
(Amelia's regular drinking (plain water) has just been take off her).
Next it will be eating.
Her swallowing process is shutting down.
It is the process for her disease.
Horrendous in "quality of life"
(She is a mess about it.).
Amelia's sarcasm and humour and most recently FOUL mood helps greatly.
This one is incredibly hard to describe unless you witness it.
It comes so incredibly out of the blue, we all fall over!
IF you have stuff taken off you (that is normal-eating-etc) you crack it.
You know what is happening.
You absolutely crack it.
- UNDERSTAND.
Disabled people regularly have a "label".
A-T more so.
One where they cannot talk, understand, do what they want or communicate
Amelia's school teaches something SO different.
They teach these kids how to do all of the above.
The commercial on TV we all waited so patiently for a few years ago came.
Melbourne zoo with Howie and Kate Howard.
Disneyland.
Anyone who has ever entered our house.
We have LOVE.
We have PROTECTION.
We hear it regularly - the difference to so many other families and also similar.
(we also have depression, meltdowns and anxiety!).
We have REALITY.
Soooooooo much more to write in the coming days.
Love to you all.
xxx
we will get through this.
Honesty in the coming days xxx
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