Hello awesome people,

I originally learnt that I could write my feelings in December 2010.

It was a very new discovery and blew everyone close to me away.

"You can write!" they said.

I would write at 1pm or 1am, because my daughter had just been diagnosed with a terminal illness.

TERMINAL.

I needed to empty my mind of the pain and hurt.

I had just been told that my 7 year old child was going to die at anytime and there was no cure.

Writing helped me sleep, talk and LIVE.

"No regrets at the end" became my motto, and "An amazing life".

I am proud of accomplishing this so far and looking at my amazing family, I feel overwhelming happiness and an overwhelming sense of achievement.

I fuck up regularly and Tom has occasional moments......

But I have made many mistakes and lost many friends.

I have also seen other peoples true colours and enjoyed their departure from our lives.

The silent support has seen Scott in keeping me going and grounded.

I am loud and he is quiet.


BUT......... I need to also write when everything is going well!

I forget about that.

Everyone here is always so supportive and has followed us from the beginning.

I write about bad and sad things.
I write about celebrity meetings.
I write about thanking, congratulating and celebrating people.

I need to write when everything is mundane too!



Amelia is suddenly opinionated, sassy and direct.

People's feelings suddenly get hurt because they are no longer number 1 or immediately thought of by her!

Teenage hood has finally hit at 15 years old.

She has a life goal and career goal for the future suddenly.

It involves animals, love AND cuddles.

(if she COMES HOME with them regularly, there will be a problem!)

Tom has started at a new high school that HE CHOSE.
I put capital letters because he was very opinionated about leaving ALL of his friends and going to this particular school.
He left all of his friends, since prep, and said "I will learn better"".

Ok.

Amelia is amazing right now.
(regular medical issues that seem to take a phone call or appointment to regulate or fix).

She is still regressing, BUT she is still HERE!

Tom will always be my handful that keeps me from crying about Amelia in the corner.

AN AMAZING HANDFUL that hugs me and kisses me daily.
I asked regularly when he was in kindergarten and early years school if he was autistic or ADD or ADHD.
Staff members would stare at me in disbelief.
I was always treated like he was just "a handful".\

I always felt like he was "the naughty child".


Recently I learnt about channeling the intellect and the energy.

Tom is incredibly clever but can join the "bad kids" immediately, if permitted.

We have all learnt that including Tom.


I am now finally learning that Tom is beyond amazing.

He has a lot of capability in that brain of his.

BUT to rewind...............

I have no expectation.....

Amelia has no expectation at the end.

Amelia has many medical appointments and mum is finally leaving the house again to work.

Mum is cleaning peoples houses.

People who understand that we may end up in hospital again.

Life is good right now !

Amanda Nicholds xxx

Hello!

Just a quick post to wish you all an amazing holiday period and finish to 2018.

We are about to "get away" and leave amazing people to look after our furbabies.

Who cares about the house and possesions!

We need time to reconnect as a family.



Thank you to those that did not show judgement with my posts.

(I have learnt from you).



Thank you to those that knew and understood my emotional rants.

(I have learnt from you too).



Thank you to those that accepted my apologies and admittion of my fault this year,

(My biggest learning, appreciation and growth SO far this year).



Thank you to those that now spend regular hours at our house here and see us for who we truly are.

Vikki, Megan, Jasna and Kerryn, we all love you dearly and 100% welcome you into our lives and weirdness.



Thank you to everyone for accepting my children at the stages they are at.



And for the emotional / grief .

A-T is horrible and unpredicative.

So are friends.

Next year is new, massive and a fresh start for me and mainly Tom.

And Scott and Amelia.

Mainly because of me.



I am sorry that my Individual posts scarred so many this year.

My pain likes to lash out to anyone and everyone.

I am learning.

Bring on 2019.

Love and a Million Hugs.

See you in 2019 xxx

Amelia's Fluffy Unicorns 2018

Hello dear friends,

(Please survive my whinge at the beginning to get to the good bit)

We have had a shit week.
Shit is the right word to use, because there has been lots of shit from poor Amelia.
And vomit....
But give me vomit anyday, not smelly, runny SHIT!

Imagine the urge of gastro and not being able to run to the toilet.

I only cried once this week....
Looking at my daughter lying on the floor in her own vomit.
(We did not make it and I could not hold her as we slipped in it).

I always hold and support her and this time I failed.

It is 9pm and we have just returned from the doctors and chemist to avoid driving in to rch, because she now has a UTI and keytones climbing.
UTI from all the shit and keytones from Type 1 diabetes (not eating, barely any insulin and having an infection).

Tonight as I was getting her ready for bed, she turned green in front of me.
(A UTI can have a flu like/mastitis like reaction. It knocks you for six. So can diabetes).


I cracked it (at 7:30pm) and threw her in the car and took her to the local GP.
We are best buddies with them, so they did not hesitate to see her.

Amelia is on an antibiotic now.
But the stern warning from the doctor was "If her keytones rise anymore, you MUST take her straight in".
Great. Thanks.

Diabetes wants to kick my arse at the moment!

There is also the fear of Tom and his levels over the weekend......
(will continue that story later)

WHINGE OVER!

NOW FOR THE GOOD STUFF.
(bet you are all pleading "YES PLEASE" now!)

A beautiful friend, (lets call her Emma *), has established a Relay for Life team ALL for Amelia.
Amelia has had control of everything, thanks to Emma.
The name, the fundraising, the decorations, the theme for costumes AND the organisation.
I thank Emma for involving Amelia so much.

Many of you would remember Amelia's first Relay for Life 2 years ago.
We were in a team for a close friends son, that had passed away from brain cancer, days after Amelia was cured of ovarian cancer.
It was a very confusing and bittersweet time. Still is.
BJ was only 6 years old.

Today BJ would have turned 9 years old.

Amelia had begun travelling through PTSD during relay in 2016.
BJ had passed.
She hated everyone and the world.
She was mildly aggressive and very angry.
She did not want to go to school "because I am different now".

The main cause of Post Traumatic Stress Disorder is the extreme feeling that you are going to die.
That you WILL die.

Amelia felt it.
I felt it on numerous occasions (especially that 15 minutes in surgery) and many of you felt it may be the end result in 2016.

The very first lap of relay, at 4pm on the Saturday, is the "Survivor/Carer" lap.
In 2016, I will never forget the incredibly vivid memory of watching Amelia drive her wheelchair around that 800 metres.
SO MANY of our friends and family were on the sidelines cheering her as she passed, that I clearly saw the recognition within her.....the acceptance and the understanding....
I AM A SURVIVOR.

I survived Cancer.

There is video of her saying "I think I am going to cry mum".

In 2017 we joined the amazing Liv's team.
A child currently in Grade 6, that has been battling spinal and brain cancer for a number of years.
We are honoured to have them join our team this year.

There is no word for Cancer.
It is beyond evil.
Especially to children.
By doing things like this weekend, we are contributing to eradicating it from earth.

In the last 24 hours, we have lost another A-T child to cancer.
Skylar was Amelia's age and was diagnosed with lymphoma a few months after Amelia's cancer.
Skylar passed away Thursday.

An amazing, dedicated member of our 2018 relay team has had to back out because her beautiful mum is in the final days of life, due to cancer.

Cancer sucks.

BUT BUT BUT BUT BUT

Relay for life is empowering, fun, inspiring and humbling.

It is a carnival-like atmosphere and reminds you of how people volunteer their time to help eradicate cancer.

There is nothing like walking at 4am, knowing you are there to help stop cancer affect anyone else.

This blog has been a lot longer than I planned.
I am sorry.

If you want and if you can.....
Come to Ballam Park Athletics track tomorrow to help the world get rid of cancer (or at least the cancer council!).
It starts at 4pm Saturday and ends at 11am Sunday.
Come and say hello, buy one of our cookies or cupcakes and contribute to our team that Emma* created,.

A massive thank you to those that either joined our team or doanted!

Tom and I, and many others, are staying overnight (God help me) because Tom has set himself a goal to walk 150 laps. Last year he walked 70 (which was a massive effort!) and now Mr Competitive wants to dramatically beat that by staying overnight.
HELLO HYPO'S!
(low diabetes levels)
I am dreading keeping his diabetes safe, but understand his commitment and dedication.
To end my "all over the place" blog....

Please have your fingers crossed for the Melbourne Demons to make the AFL final!
They play at 3:20pm tomorrow.

Tonight Tom found out that I did not enter him into the Melbourne Demons Membership ballot, in case they finally make the Grand Final.
I explained that it is for only 1 ticket.
He began gasping and staring at me in WTF?!?!

"What?! Do you expect me to take you and then sit out the front until the game is finished?! YOU are 12 years old and cannot attend alone".

"NO!" he responds.
"You wouldn't have to sit out the front! I would catch the train home!".

12 bloody years old!!!!!!!

Come to relay and come and say Hi.
A lot of effort has gone into decorating our area for Amelia.

Fingers Crossed that she is there.

xxx


* Emma is not her real name.
It is actually Mother Teresa, but we have chosen to conceal her identity.

TOM's First AFL Grand final!

Hello Dear Friends,

Tom is in his first Grand Final tomorrow for AFL Football!
His own team and in his own game and in his own age group.

Under 12!

So young, but actually so important.

All of the kids have watched their supported AFL Professional teams in games, finals, brownlow medals and best'n'fairest for so long (possibly ALL of their lives)......this is HUGE!

OUR TEAM has made the Grand Final!

HUGE!

Tom is actually playing after 6 years of Junior Football.

HE IS ACTUALLY PLAYING A FINAL!

BUT.....

My blog is for SO much more.....

We have a coach (X 3 YEARS) , team manager (past and present), runners (x 3 years), trainer/s(x 3 years), ground marshall/s, Interchange Steward, umpire, goal umpire, Committee Members, loving parent supporters etc.......

THANK YOU.

Whether we win the Grand Final or not....
YOU have all been awesome!!!!!!!!

Thank You Dave Kelly, as we know this is your last year.

Thank you for treating our son as your own in training and games.

You know our situation of having an older child with a terminal illness, BUT you treat every child equally.

Fairness in life for everyone is equal.

Tom's skills at his age needs to be measured equally, against everyone else.
We all understand that.

Tomorrow and every game is about skill and game pressure...........

Go Langy Whites, Under 12's for tomorrow at 2:20PM!

Homeless and happy

Hello dear friends!

(I have permission to post this from the family. I do not name anyone).

This last week has been an eye opener.

I have been astounded by how a life, situation and family can end up in a difficult situation so quickly.

Ten days ago, I was asked to house one of Tom's friends for a few days as the family was homeless.

HOMELESS?!

I did not hesitate to say yes.
This child had already stayed here numerous times this year and it was easy to "slot him in" with our family and house routine.

I did not really know the rest of the family.

The mother mentioned she would drop him around the following night.

I arrived home crying that night, after picking Tom up from his snow excursion.

Where were they sleeping that night?
How is this happening to them?

The next night the child was dropped off.
I asked the mother where she and the 2 daughters were going to sleep that night.
She could not give me an answer.

I told her that I could not let her leave then.
They would all just stay here.

Then I needed to ring Scott at work and tell him!
He was awesome and agreed with me.

This family just needed a roof, heat and safety.
Food, showers and washing machine.

All the things we all take for granted (and yet struggle to pay for!).

The mother was then able to organise herself and their future.

She works, but has no rental history, so getting a rental was going to be difficult.

After receiving a house through Centrelink (very lucky and a fluke), I realised they had NO furniture or appliances.
No bedding, towels, cutlery and not much clothing.

I asked for the mothers permission to post something on my Facebook account/s.
She was extremely accepting and grateful.

"Be warned" I said.
"It is going to happen very fast and quickly.
Anyone following Amelia and still friends with us is very kind and generous.
WE will need to be organised and ready to pick stuff up for you straight away".

Within 24 hours we had enough furniture to fill 2 houses!

THANK YOU!

Thank you to the person that drove 1 hour (each way) to deliver all of her excess plates, bowls and cups.
Thank you to the person that donated all of the furniture and appliances from her recently deceased family members household.

There were SO many others.
It is too many to list!

The offer of clothing, towels and bedding here AND still to come is greatly appreciated.


While everyone here has coped as well as they could for the past 8 days, (lunch, snack, medication and coffee for 8 people at 8am!), Tom and his mate treated the whole experience as a celebration sleepover!!!!!!
It has made the whole experience funnier and easier.

They treated packing the car up today as a funeral procession though!
The body language and facial demeanor was priceless!

No more PS4 Fortnite....... yelling out to each other the past 8 days while gaming  (WITH HEADPHONE.... MICROPHONE mouth pieces!).

They were in the same f'n house for a week.!

This child will not have Internet for a while obviously.

Amelia struggled greatly with lack of sleep, constant noise, change of routine and mum (ME!) not as responsive to her.
School was worried about her and so were others.

Eventually I said to her "Do you want them all living in their car again?!".

Amelia and the 7 year old had established a beautiful relationship by this stage, created through a donut making app on Apple.
LOL

Amelia said "No. I am her pretend big sister now. I want her here".


In our situation it has worked well.

I am home (as a full time carer) so cooking, washing and cleaning needed to change from 4 people to 8 people.
Their insight to our life and coping mechanisms and vice versa has been fully opened and seen.

MY MESSAGE HERE?

Be open, communicative and acceptive of differences for anyone and everyone.
Don't assume laziness, bad choices or wasted money as the answer (all those happened here).
Sometimes advice and new directive is needed.

We accepted and helped on bad choices this week.

We have ALL made bad choices in our lifetime/s.

YOU have helped me to set this family up in a new life, a new pathway and beginning with your advice and assistance.

YOU have assisted us with so much for Amelia it is too looooooong to list right now.
I was able to pre-warn this family of your possible response with their difficulty, because kindness is massive on this page,


This evening Scott was approached by his boss
"I hear that you have taken in a family that is homeless. Why am I only hearing about this now?".

"All is good" Scott said.
"I received a call here last week that they were moving in. My wife said they would be there when I got home. I trusted and agreed with her. Hard to make my take away coffee in the morning though. Too many people in the kitchen!"

Scott rolls with the punches and accepts the family and choices they make!


Tonight they have a house with blow up mattresses, heating and take away (their choice) before they get their permanent essentials.
They need to reconnect and bond again as a family.

Thank you for your help.

You are all amazing xxx

(I will check in with the family daily xxx)

P.S
I forgot about the Head Cold I recently caught and can barely function.
P.P.S
I forgot about the 8 year old Pug dog we are minding (organised months ago) that arrived a fewdays ago.

BUT WE ARE ALL GOOD.

Alcohol should be delivered to........
LOL

15 and SASSY

Hello dear friends!

Apologies for the delay in writing recently, but we have been quite busy.

I have also not felt the need to.

My depression and grief has eased.

Scott said to me recently "It is weird without you blogging. People are actually asking how we are, because they don't know!".


Anyway.....
After writing for so long about my emotions of a parent of a child with a terminal disability (2010) and health issue AND another child with a serious health issue (2013)......

I do not know what angle I should take here now.....



Scott's new job that is directly helping those with a disability....?

(It is awesome!)



Tom's new role of being male and entering puberty...…
OR
having difficulty at school suddenly....

Tom may have met his match with his teacher!


OR......
traveling Interstate on his own...….
OR...…..
choosing a High School perfect for himself ?



Amelia's new role of having carers for 6 months and deciding they are better than me (don't stress. I do not take offence)...…

Clashing with people and standing up for her rights...……..

"I am not a baby. Tell them not to talk to me like that!"

Talking to carers regularly about Amelia's future and the pathway she wants to take now and in the future ?

Recently at school, Amelia was asked to create a "Business Name".

She said "Cool and Sassy"

PERFECT for her personality right now!

She is VERY snappy!



My battle with ….. EVERYTHING and WHATEVER!

My battle with depression, anxiety and saying goodbye to my career (that I worked VERY hard for).

My battle with Amelia and Tom shoving me aside, as I ask others to enter and assist.



NDIS has been awesome, BUT a massive workload.

Soooooo much to organise and approve through the proper channels.

I have listed what I want for Amelia (she added lots too) and now we need to get the proper assessments for it all.


I WILL SUCCEED.


Our amazing friend, also with A-T, , a few hours away, turned 21 today.

"THEY NEVER SAID I WOULD LIVE THIS LONG" Caitlin Caruso said.


Exactly what we were told.

HAPPY BIRTHDAY CAITLIN.


As with any kid that we meet or enters our house, we adore you!

Maybe we will watch Descendents 3 together soon!



I and We are good and not good.

As with any teenager (especially one who is desperate for Independence!)

Sorry.

VERY blaze and non descriptive.

But we are tired.
We are busy.

We are good xxx

My Beautiful, Sweet 15 year old.

Hello Dear Friends,

7.5 years ago I began writing about our child's horrible diagnosis.

Amelia was 7.5 years old.

Fast Forward 7.5 years and she turns 15 years old tomorrow.



MAJOR MILESTONE from the day in December 2010, when the hospital told us to "go home and cherish every single day. There is nothing we can do".


You all now what we have gone through and what Amelia has "lost" in the last 7.5 years.
So many of you are right beside her regularly or have been at various times along the journey.
Many of you have followed our journey through my writing.

Those closest to Amelia may struggle, fail in many areas and outplay emotions irregularly.........
(it is hard to live in this house and watch and help with the daily struggle).

BUT what her life, her personality and her words have taught us, is life changing.

I like to think of this trait as "what she has gained".

She regularly alters a persons "life pathway" and makes them see their life differently, without realising it herself.

I know she has changed my life greatly since she was born.

I now sit back and enjoy watching it happen to others.


Happy 15th Birthday beautiful, sweet Amelia.


May your week of celebrations bring you great joy.

May your long lists, demands and requests end after your birthday week!!!!!!
I am exhausted!



Some photos of Amelia's life so far follow.

xxx

We look forward to celebrating so many more years with you.

xxx