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

How Would You Feel? By Tommy Nicholds

How Would You Feel?

By Tommy Nicholds


11 Years Old.



How would you feel if your sibling could not walk for the rest of their life?

Well, my sister can't, because she has a brain disease by the name of Ataxia Telangiectasia.

Yes, It's a mouthful!

It is also commonly known as A-T.

Today I am going to be talking about how it affects my life and also how we can find a cure.

Over the last year and 3 months, Mum and Amelia, my sister, have gone into hospital at least 5 times, which is very hard being separated from each other.

The occasion that I will be talking about today was in June 2016, when Amelia was diagnosed with Ovarian Cancer (which is one of the complications of A-T).

I don't know the exact date, but it was a Friday night after school, and I was told to got to my Poppy's house, when the school bell went.

Why?
Mum always picks me up.

(Around June 2016)

When I got to  my Poppy's house, they sat me down and we had a discussion with Amelia and Mum on FaceTime.

Amelia was really sick and no one knew why.

Mum and Poppy seemed scared.

Amelia was crying about the tests they were doing to Amelia.

That night I was very worried, because no one knew what was going on.
Everyone seemed worried and scared.

The following next week, the doctors found out that Amelia had a 14 cm wide tumour, which was full with 1 Litre of Fluid.

I didn't know much about cancer, but I still broke down in tears , because I knew it was dangerous.

That week I was very down and emotional because I didn't get to see anyone in the family, since dad still had to work.
I couldn't help but cry in bed some nights.

I really love Amelia and always have.

I am only 11 years old.

My teacher was very supportive that week, because I would come in each morning and fill her in with all the news.

During the day she would sit our whole class down and explain what was happening with Amelia and then all the other kids in my class would share their stories about families and friends that have experienced cancer and other scares.

It was a week before my 10th Birthday (2016), and I was begging mum to come home for the weekend.
I began begging mum to come home for my 10th birthday weekend.
They did, which restored my happiness.

(I now Know how much work this took)

An hour before my birthday party, Mum explained that Amelia had become a lot worse.

They had to leave straight after the party to return to RCH.

I was devastated and it was in the back of my mind during my entire 10th birthday party.

Mum and Amelia are about to leave indefinitely.
Amelia may die from this.

Will Amelia return from this operation that everyone is so scared about?

Two days later, doctors performed an operation to get the massive ovarian tumour out of Amelia.

People all over the world wore pink to show their support of Amelia.

That day I was feeling nervous about Amelia and nervous and this operation.

I began to channel my happiness into seeing all of my friends wearing pink at school, and seeing Amelia and Mum later that week.

The Operation was a success.

Now I am coming back to the present day, where Amelia wakes up smiling, laughing and playing with her friends, every single day.

That to me is true inspiration..

Thankyou for listening to my story about our family.

I hope I made a difference.

Amelia is amazing.

Hello Friends,

I recently published this blog without finishing it properly.

I would like to finish it properly now!

We are all travelling really well right now and I am so incredibly proud of us all.
We are surviving and all feel SO loved.


(I will update about Amelia's hands and NOW feet at a later stage.
Degression and A-T are savage and nasty.)

Please enjoy some ok stuff for now.


I recently passed someone so bitter and mean, in the street, that it made me actually happy.
They are gone out of our lives now!

Toxic people are now gone.
100% gone!


Scott has just changed employment.
It is a role that took 2.5 months of tests and interviews to get and we are all incredibly proud of him, for surviving "the cull".

Scott has always had an amazing logic, street intellect and vibe.
It is a job that he will be able stay with for life.


Amelia has adapted to her new carers so well and we are all so incredibly proud of her.

(and we all really like them!)

As all of you know, I have been her main carer, since she was born.

2003.

Last year I began speaking to her about the unnatural connection we had developed.
She agreed quickly.

She was 14 years old and had never been separated from me.

She needed independence and loving connections to others.

I needed to find me again.



Amelia has fallen in love with 3 of her carers.


To watch and to listen to them has been amazing.

I know and hear that they feel the wonder of Amelia.

They have a lifetime to remember her and they are showing the impact of her on their souls.


I feel honoured to share the gift of Amelia.........




Tonight we were watching an episode of "The Voice in Australia".

The episode discussed the "medicine" of music.

People were discussing how music helped them through a death, bullying or love heartbreak.

I paused the episode to explain to the kids about how music has helped me in recent years.......

I know how I have spammed you all with music when I am really struggling........

But I really want you to close your eyes and imagine my explanation of each individual in our family tonight.

Especially when we are in a really good place and hope to stay there....

Many of you will have heard all of these already......

Get a cuppa (or wine!) and survive the ads.

Imagine the minds of our crazy family!

My message for Amelia....
It was when I finally realised that she will show me an amazing life guided by herself...... No matter how short.
https://youtu.be/jgfxmlAZUWU

My message for Tom.......
https://youtu.be/jpTYG_Sqqdg

(We are seeing 90% evidence of siblings RUNNING when 18 from a family with a disabled child. Their own sibling. We are determined to not let this happen).


From Tom....
On my own page.
"He gives everything to others" Tom said

https://youtu.be/xpVfcZ0ZcFM


On my own page, a message FROM Scott to me.....
https://youtu.be/UfmkgQRmmeE

A message from me TO Scott.....
https://www.youtube.com/watch?v=lp-EO5I60KA

BUT
For all of you.....
This one.
https://youtu.be/bwB9EMpW8eY

I will never forget this song during Amelia's cancer diagnosis.
3 weeks of all of you keeping me upright, functioning and demanding answers.
(Code Grey was also threatened when they were going to do wrong by her!)

https://youtu.be/bwB9EMpW8eY

These 2 songs have been Amelia's in the last 2 years (12-14 years old) to get her through hard times.....
https://youtu.be/xo1VInw-SKc

and 

https://youtu.be/xo1VInw-SKc


THESE ARE THE NEWEST ONES....
(Tom has requested that Amelia get Bluetooth headphones, because he believes hearing them 89 times is quite sufficient).

https://youtu.be/gdjR2lvIfJ4
(she has secretly fallen for Zac Effron)

and.....

https://youtu.be/CjxugyZCfuw

This one is quite profound.
It is about anyone with "difference".



But when I asked Amelia to choose her favorite song of life.......
She chose this one....

https://www.youtube.com/watch?v=t_YXSHkAahE

Quite profound really.

She always chooses or says the things that blind side me.

I seem to absorb each child around me and "their meaning" and "purpose" a lot!

Life as a parent?!

Recently Amelia said to a new carer incredibly innocently....


" Apparently I am famous. I never meant for this to happen".


Nor did we Miss Amelia.

But when someone so incredibly profound, innocent, knowledgeable AND
MIND BLOWING as you arrives, we need to speak about it.
Your messages are always profound and mind blowing.

You have shown and proven so much in the past 8 years.

We have no choice BUT to share your words.

We may not be religious, but we can still listen.

Thank you for taking the time to listen.

xxx