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Hello friends,

I do not want you to fall off your chairs, but I am a bit happy!

I know, I know, a bit unusual of late, but I can genuinely share good news with you all.

Today we attended our first appointment with the surgeon that operated on Amelia in June of last year (2016).

Yasmin came into the waiting room to get us at our local Royal Children's Hospital.
Amelia had her back to her as she was enjoying watching the young children play outside the window.

I proudly turned Amelia around in her wheelchair.
I proudly showed her what she had achieved.

What did she see?
A smiling, plump and healthy child.
A beautiful, eye sparkling child full of questions.

A child that is content and happy.

Yasmin gasped loudly and smiled.
"Come into my office" she said quickly.

When we got there, she kept saying "Oh my god. Amelia you look so amazing. I am so happy".

You see, when she first met Amelia last year, Amelia was very sick.
She was vomiting every morning and had severe abdominal pain.

She had studied all of the scans that had been done before we were referred to her.

Yasmin met two very frightened parents and a child with a massive unknown mass connected to her ovary.

On Operation Day, where SO many of you wore pink in support of this amazing child........ so many of you prayed, hoped and hugged your own children....... she operated.

Yasmin was the one who warned us of the fear of complication on the table (possible death).
She was the one that warned us that it may be cancer.
She was the one that said the operation may just be the start of a long journey.

It brings SO many tears to my eyes to tell you that today, I turned this amazing child around in her wheelchair to show Yasmin what she had achieved in her surgery.

She saved her.

(Something else did too, but I plan to share that at a later date).

BUT this woman opened our daughter up and did her best to remove not only the 14cm / 1 litre fluid tumour from her abdomen, she did it WELL.

She checked everything around the tumour for damage.
She removed the appendix because it had been so badly beaten.
She sampled the stomach, bladder, bowel, liver and kidneys for SPREAD.

Today I hugged her and told her that everyone that loves Amelia thanks her for saving Amelia's life.

She did.
She so, so, so, did.

No matter how long it was growing for (possibly 2 years) or how it arrived..........
She was the one to remove it AND remove it ALL.

Yesterday I was approached at Amelia's Secret Garden (her VERY Special School).

Amelia has been nominated to receive a "Children's Courage and Bravery Award" from the Lions Club for last year and her amazing effort to bounce back this year.

Nothing like bursting into tears at home time!

So many deserving children and it was a "unanimous" decision that Amelia receives it.

Amelia is BACK and I am soooooooooo incredibly proud of her resilience.

You can get back on your chairs now.

xxx

P.S. Must go.
We brought back Gingerbread Men from our "secret haunt".
Daddy wants two.
Amelia is yelling at him
"ONE! We bought you ONE!".

Feb 2017

Hello friends,

So much pain and suffering happening at the moment with some of you and so much celebration and elation amongst others.

From one of my previous blogs, Scott (my husband and the kids father) found THE most amazing job.

He is working in the disability sector and could not be more perfect for it.
Scott is now coming home from work bouncing with excitement and talking with such "passion", it has blindsided the kids and I.
He has never been like this about a workplace.
It is amazing to see.

Personally, I have struggled since just after he began and I am accepting that it is ok.
It has taken a while of "beating myself up", but I think I now understand the reason.
(explained further on).

Scott had to leave work because of the nasty new management and the "after affect" of Amelia's cancer diagnosis.
He could not be the nasty person firing people and following the new heartless rules.

My blog thankfully introduced him to a new job opportunity to someone that knew his "situation" and embraced it.
Scott could be a possible asset.

I will be forever grateful to this person for contacting me.

The change in Scott is immense and everyone comments on it now.

Since Scott started working and the kids started school, I have fallen "in a heap".
Pathetic........ I KNOW!

I think the pressure of unemployment, me not being to work due to both kids illness/s and the stress of "what the fuck are we going to do" has caught up to me.

The financial stress is a killer.

Scott started work and came home with amazing stories and passion.
The kids started school and after some "teething" problems from their diagnosis/s they are now doing well.

I fell apart after they all left during the day.
I was SO angry about this.
WHY?
Scott is working!
The kids are back at school!

Why the fucking hell am I not coping?!
Why can't I leave the house?
Why is my mind and heart racing?
Why do I just want to stay on the couch ????!!!

I have come to the conclusion that I have held it together since Scott became unemployed.

Since Amelia's cancer diagnosis.
Since her subsequent Post Traumatic Stress Syndrome.
Since my own subsequent Post Traumatic Stress Syndrome (since I thought Amelia had died during the operation for 15 WHOLE minutes).

Since Meredith's sheer hell of her 6 year old passing.
Through Gary Watson's sheer hell of Julia passing.

The pain may still be there, but the immense pain was over for me for a while.

My family all left.
My family all had school and employment.
Scott FINALLY had a job.
The kids were FINALLY back at school.

(please do not judge the 24 hours a day/ 7 day a week job of parenting a special needs child. It is constant. We have two. But we have 1 that gets upset at respite and needs everything done for her. EVERYTHING. I struggled with these school holidays because it was so exhausting).

In the last 12 days, I think I have let myself experience the suffering of not "having to" hold it together.

It all caught up with me and I could not physically move or leave the house.... for days.
It is still partially happening.
The kids are back at school.
Scott has the perfect job.

Amelia is happy and Tom is happy and Scott is happy.

I will now work on making me happy after partially "holding it together" for months.

xxx

Hello dear friends.

Tonight I have bombarded people on Amelia's Project Facebook page with photo's of Amelia and her gorgeous friend Jackson on Valentine's Day.

I have been laying in bed wondering WHY this is so important.

Why tonight has meant so much to me    .....   and for her.

Jackson and Amelia have celebrated (and been teased) about this day for almost 5 years.

They buy each other gifts,   of their own asking  , and ask to spend the afternoon together.

WHY is it so special?

Is it the memories that we as parents can have in the future?
Maybe.

Is it the "silent" connection they have with each other that many wish for?
Maybe.

Is it the acceptance and understanding of each other in their different disabilities and difficulties?
Maybe.

Is it the future of marriage and children that they will NEVER have?

Probably.


I look at my posts and blogs about Tom and his unique personality....
His clever maths skills and his incredibly compassionate nature with Amelia.
His competitive nature and my worry about a suitable High School.

Why?

Because he has a future.

He has a future to become something amazing.

He is probably like so many other children, but he is the one I can look into the future for.

Someone who is not "terminal".

A person to make a real difference in the world and for his future wife/husband and family.

He has a pathway available to him.
A pathway that is ready and able to take him on it, if he chooses to walk it.

But a school may help him WALK it.
I need to find him THAT school.

(Absolutely NO mention is EVER made to Tom about this, before you question!).

Then there is the posts I write about Scott and I.

Yes.
We met when we were 15.

Yes.
We are both 42 now.

Yes.
We have a 13 year old child who is terminal and at a Special School.

Yes.
We have a 10 year old Type 1 Diabetic.

Yes.
We have not separated and divorced.

Yes.
We have grown closer with the stress and worry.

Yes.
We are a house full of love and talking.

Yes.
We are a house full of stress and anxiety

Yes.
We are a house full of LOVE and SUPPORT.


This house is not full of ignoring, sibling rivalry or work stress.

We have lovingly created a house of love and emotional support through lack of money.

BUT we also have the niggly disagreements!
ANYONE would with financial stress!

We have learnt that friendships come and go.

BUT love and commitment stays.

A TRUE connection stays.


YES!

Amelia and Jackson have shown me sooooo much in the last 5 years.

Acceptance
Love
Understanding
Friendship

And living and loving life, no matter what the circumstances.

(Photo taken 2 years ago).

This is why I cannot sleep.

These 2 people are helping to shape my thoughts and my future.

The WHOLE school that they attend does.

THE most amazing children.

But I had 2 of them (one being my own!) in our house tonight.

One other, Tom, is being formed and shaped based on what he regularly sees and helps with here.

Scott and I are merely the moulders, like an artist in clay.

We mould and learn while Tom is shaped into his adult form.

Amelia is constantly requiring "adjusting" and "reminding" with the loss of her brain.

Tom needs to take over at some stage.

We need to be the guiders, rather than the shapers at sometime.

Amelia will be a constant.

Thank you Amelia and Jackson (and soooooo many others).

You are teaching so many.

Maybe it is not about the FUTURE, but about the lessons of NOW.

Maybe you are teaching many about each and every minute of NOW.

Appreciating the NOW.

We are ashamed of who we used to be compared to now.

Your compassion, understanding and acceptance is an example of who should "take over the world".

Thankyou.

Thankyou for coming into my life and our lives.

You have changed me and us for the better.

xxx

Scott

Hello everyone.

I have written many entries, both on this blog and the previous one about Amelia, Tom and I.

There are possibly 2 blogs that focus on Scott.
He is not an extrovert, like me.
(insert laugh here!).

For those that do not know, Scott is my husband and the kids father.

We met in 1990 and fell madly in love very quickly.

At 15 years old, we realised we had found each others soul mate.
We both had amazing friends and were able to still enjoy those relationships as well as our own......

For each of us there was an emotional, intellectual and physical connection, between each other, that surpassed anything either of us had experienced.

We could talk about ANYTHING and EVERYTHING.
And we did.

Scott supported me through the final years of high school and agreed with my dad about "study and grades".
He also supported me through 3 years of University.

As much as I argued with them both, I understand the importance now.

When I first saw Scott, he was already working full time.
I actually declined a "movie date" because I found him "big and scary!".
He was muscly, in overalls and I was in a private girls school dress.
I had never had a "serious" boyfriend.

After our first encounter......... (cough)......kiss,
He did not call me.

When I saw him 6 days later at Macca's (of course!),
I marched in and demanded his phone number and requested to know what he was doing the following night.
Yep.
That was the first sign of the person I was going to become.
(Miss Sarah Williams may remember this encounter!).

I still have his phone number written on a piece of scrap paper in green eye liner.
(thank you Sarah!).

We supported each other.
We grew together.

WE LET EACH OTHER GROW.

We did not grow apart, as others predicted.

We grew closer.

Scott and I may be so very different in so many different ways.
We may have so many different interests and stereotype personalities.

But we have always met back in the middle.

We listen, accept and understand, even though we are different in many ways.
We let each other be individuals.

WE WERE INDIVIDUALS.
We are individuals.

A persons work life is very different to their home life.
You can hear stories and scenarios, but it is very one sided.
You only hear your partners side.

Because of my more talkative and extrovert personality, I heard about the other side of Scott's work life very quickly.
He would have been about 21 years old when I began having conversations about his work "persona".
As he worked his way up to management positions.....

Grown men would get emotional telling me about how much he had made and helped them grow and develop, not only as a person, but also an employee.

I would come home proud, but not surprised.

I cannot say that he is proud of the work ethic and the culture he creates, because he is not someone that "gloats".
I also truly believe he does not see it like I do.
And the people who have worked with him.

I have always had to hear it from others.

Every workplace that Scott has been at since, I have heard it from those that adore him.
Whether it be emails, phone calls, Facebook or face to face.
People want me and us to know the difference he made in their lives.

There are so many, I cannot possibly list them all.

WHY?

Because he cares about the person before the profit.

He understands the persons wellbeing and self esteem not only makes this 1 lifetime they have, it also makes a happy person on the phone.

=profit
=friendship
=life goals


But friendship, loyalty and trust comes first.

That is HUGE.

He adores the people he works with and for.

He genuinely cares about every single individual that works with OR for him.
He cares about their personal life as well as their work life.
Scott genuinely grows to adore each person, because he understands that they are an individual.

He worries about them and keeps a personal, as well as Professional, eye on them.
Only because he cares for them.

Seriously.

Trust and loyalty can go a very long way in Customer Service and business.
But it can be parallel in creating amazing friendships too.

Scott knows that.

A happy person is a happy Customer Service Person.
You can help create a happy person to work with and come and see everyday.
You can help a person to develop their work capabilities.
You can HELP a person see their strengths, rather that everyone focus on their weaknesses.

Last year I was privileged to join him in saying goodbye to so many people that have shaped his life, on and off, in the last 15 years.
People that he has helped to see their own strengths and positives.
But they have also helped him see his own.
I thank them all individually for that.

So many workplaces focus on negatives and weaknesses.

Scott does not do that.
Each person is an individual and has SO much to offer according to him.
Everyone has a strength.
Everyone can work, but not overly stress on their weakness.
Weaknesses can easily turn into a strength.

Saying all of this, I totally understand the scenario when I began Kindergarten Teaching.

60% cannot like you.
It is totally impossible.

Walk into a room of total strangers and it is impossible for them all to like you.
YOU could not walk into a room and have them all like you.

True.

I am sure he has had mistakes and fucked up.
But isn't that my whole point?

We are all human.
We need to build trust, loyalty and friendship to create profit.

BUT work is also a MAJOR part of our week.

Lets try the positive approach of getting results (and Scott has consistently proved that this works for 2 decades).

Trust and loyalty creates friendship too.

I am greatful for the amount of friendships that Scott has walked away with too.

Scott has chosen to leave his last workplace so that he still holds on to his current work ethic that people come before profit.

Because it will BUILD profit.

And it did.
But not enough for "them".

They thought the opposite would create even more.

Scott absorbs his own feelings for those people and the knowledge of their capabilities.

That may sound wrong on many levels, until you research MANY entrepeneurs that say..........

Look after your employees first and foremost and they will look after the customers and the business.
(Richard Branson is one.....).

It is so true.

As I have mentioned MANY times, my life is not as I predicted.
Scott is the same.

When we met 27 years ago, this was not the way we thought our life would go.

As he battles the world of applying for jobs, I need him to know what an amazing person he is and the legacy he has left behind in the previous years of work.

Scott is an employee businesses should crave for.

His biggest achievement, besides the change he has made in people working for him, is my growth as an adult and Amelia and Tom from birth.

The quiet ones are sometimes the most magical.

xxx

Annie

Hello Everyone.

Today was the end of an era for Scott and I.

The last surviving member of our very first family, before human children arrived, closed her eyes for the last time this morning.
Below is a photo of our first "children".

Scott and I are approximately 27 years old in this photo.

Annie is in my arms and Tessa is in Scott's.

They were half sisters.

Barney is at the front.

We treated them like humans and spoke to them like they understood.

The bond between us and our "fur babies" has always been strong.
They were family members and will always be treated as such....even in our memories.

I have always had a massive love of animals and believe they should be part of every family.
Their personalities and the laughter and love they bring is indescribable.
And the loyalty.
No one describe the loyalty.

Barney passed away 9 years ago unexpectedly and left a massive hole in our family.
You could almost tell him to turn around 3 times and go and stand in front of the fridge and he would.
He was incredibly clever.

Tessa was the neurotic one. She suffered severe anxiety, but Annie always kept her settled.
Tessa was incredibly affectionate, but could also be incredibly frightened easily.

My mum purchased the cats for us after our very first cat was hit by a car at 1 years old.
Mum could not stop us crying for 48 hours and told us to "get in the car".
She had found 2 kittens that no one else wanted.

They ignored us for years, quite happy with each others company.
Then one night they started sitting on our laps craving attention and love.
We could definitely give it in abundance.

But they were demanding!
They did not shy away from telling us what they wanted.
If a person entered the house, they did not hesitate in howling at them, almost demanding to know "who are you and what are you doing here", before jumping on their lap!.

Tessa was the first to shower Amelia with love.
In the mornings when Amelia first woke up and in bed at night she would crawl under the doona and purr against Amelia's chest. Annie snuck in sometimes, but Tessa was very protective of Amelia.

Tessa passed away suddenly 12 months ago and Annie instantly took her place in caring for Amelia.

When Amelia woke up in the mornings Annie would cry very loudly until Amelia was sitting in her power chair. She would howl AT HER on the toilet to hurry up, which gave us many laughs.

When Amelia returned from hospital last year, Annie refused to leave Amelia's side all day and all night.......for months.

In this last week Annie had gone downhill and showed her 19 long years of age.
An exceptional innings and one we all know was filled with love and attention.

For the last two days I have pointed out to the children how she was uncomfortable and struggling with toileting.
We decided as a family it "was time".

I will never, ever forget though, gently handing Annie to Amelia and saying "You need to say goodbye".

Amelia's beautiful, caring face fell apart with emotion as she cuddled her treasured companion one last time.
We all cried with her.
It was absolutely heartbreaking to witness.

How do you say goodbye to a family member?

Annie peacefully passed away this morning in my arms.
For 19 years she was my baby and for Scott and I she was the last surviving member of our very first children.

I have explained to Amelia that Annie is now waiting for her at The Rainbow Bridge.
They will be together again one day.

RIP beautiful Annie.
xxx

Better People

Hello Everyone,

I read an article recently and it could not be more spot on.

It talked about many things, but the thing that really stayed with me was the bit about "social isolation" for those of parents with children with special needs.

I am not going to go into great detail, but the way it feels to socialise with a child that is 13, but has the needs of a one year old is hard to describe.
She will never grow out of this stage and can quite often come home crying because "no one talked to me".
"You talked grown up talk and I just sat there".

Our child should be able to look after herself in the mornings, so we can sleep in a bit.
She should be going out to the movies with her friends.

I know it and I feel it the entire time.
Amelia is rarely included and it breaks my heart.

If you are going to socialise with me, you need to realise you need to include her as well.

24 hours a day/7 days a week, we toilet, feed, entertain and try our best to keep our child that needs us to do everything and stay happy.

We also have a very active 10 year old that wants you to play cricket, basketball, football and take him to the beach.
He wants to get out of the house and live like other families.

It is so hard with the depression, anxiety and the parent guilt x10 that any other parent experiences plus the extra load.

I battle daily with the "judgement" and comments of others.

I get messages about how I am coping and how I should do it better "for my family".
I have "vices" that I am ashamed of, but I will not apologise when I am in Royal Children's Hospital for 3 weeks straight waiting to see if my child is going to die.
If I need to smoke to get through that period, I will.

I delete people off my FB account that never comment or make themselves known, because I believe they are only there to pass judgement.

Please don't judge unless you are prepared to swap lives for 6 months or try to understand what we live.
Have your children placed in the same scenario's that ours are for 6 months and see how you cope with the stress.

Day after day and year after year.

This year I will be focusing on my immediate family and those that do not exclude Amelia from conversation and interaction.

I am all that she has.

Children rarely include her (except for Tom) and there are only so many times that I can place her in front of a "movie".

Last year in hospital and afterwards, when she was so depressed, has made me realise even more how we are joined at the hip.
I have no choice.
She has no other way of being included in this thing we call "life".

I have no choice but to have essentially, a child with me constantly.
,
That is what my mission is, obviously in this life.

Scott has been unemployed since October 2016 because of the latest "baseball bat" to hit us.
Cancer.

You cannot keep functioning in the corporate world, keep up with the complaints, negative people and defending the people you have come to love so dearly and then come home to ....... us.

We are a different kettle of fish.
Every single one of us in this house.

Emotional Intelligence and Stability is our only goal.
Not houses, cars or money in the bank.
At the moment we are struggling, but we have each other to love and to talk to.

You do not give birth to a child expecting a scenario like ours 13 years later.
The likelihood of more "bad news" to come, makes it hard to stay positive constantly.

Please do not judge.
Either accept, support and stand next to..... or just fuck off.

Every single year, month and day is a new thought, growth and development for anyone.
For us it is even more so.

You are shaping our children into either the people they will be or the ones that had the most amazing people enter them before it ended.

What will you be to those around you and to us?

I know what I choose and I am sitting comfortable with my decision.

xxx

A New Year

Hello Everyone,

New year, new goals and new aspirations.

I am so incredibly proud of Amelia and her ability to come out the other end of PTSD.
She has actually come out the other end incredibly energetic, sarcastic and demanding!
More so, than before the cancer was diagnosed.

But I also estimate that the tumour was growing for approximately 2 years previously, looking at blood test results since 2014.
She has obviously been very sick and battling for quite a while.

Cannot wait to pick up energetic Tom from Type 1 Diabetes Camp tomorrow.
I know he will have had an awesome time and it will, like usual, be a battle to get him in the car.
This is his 4th one!
Looking forward to having Mister enthusiastic and energetic back in the house.

I have deleted the FB off my phone to try and focus on areas of my life that are so much more important.
Looking forward to focusing on family, our house, cooking and the book I started years ago again.

You do not realise the emotional toll that FB takes on your mind, body and life, until you really sit back and reassess.

Reading, commentating and sharing sad and emotionally upsetting blogs, comments and sites takes it toll.......
At least for people who really absorb it.

We have A LOT going on here and that and they will now be my immediate focus.

Last year took a ridiculously major toll on Scott and I and I have to stop investing myself in others and their children.
(Meredith and Gary/Julia not included in this comment. We will always be there for them).

Our life is hard enough without taking on others.

Catching up with friends for coffee and BBQ's will be my new contact outside the home.
VERY old school!

Cannot wait for a totally fucked up year!
(Please read previous blogs for clarification on above statement!)

xxx