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

Thank you 2016

Dear Everyone,

Tomorrow 2016 ends.

Thank you.

Thank you for the messages, love and support when I was sitting in Royal Children's Hospital, petrified of losing Amelia sooner than any of us had predicted.

Thank you for supporting our whole family in what has been a difficult and emotionally challenging year from multiple directions.

Thank you for your friendship.

It has not gone unnoticed and is definitely appreciated to beyond the point any of you would imagine.

Thank you for being there.

Amanda
xxx

P.S.
This is one of the songs that got Amelia and I through the hospital stay.
Thank you for making us feel this way.

https://www.youtube.com/watch?v=bwB9EMpW8eY

End of 2016

Hello everyone.

Feeling quite reflective tonight.

Julia's funeral was today and it was beautiful.

It is the end of what has been a difficult year full of emotions and heartache, but tonight I want to post about Amelia.

She is doing SO well.

Post operation, post cancer and post hospital she suffered from Post Traumatic Stress.
She hated the world, she hated her life and she hated anyone and everyone.
It was 24 hours a day, 7 days a week for months.
It was really hard to look after her and live with her.

For Scott and I, we would regularly debrief once the kids had gone to bed.
One night Scott asked me "How do we pick ourselves up and get back to being happy?".
"Feed off Tom" I answered. "His love and enthusiasm of life will get us through".

And it did and it has.

Amelia finally got back to see HER horse at Riding For the Disabled.
That first day was quietly magical.
Holly the horse actually licked and appeared to be kissing her.
Amelia's smile and the very beautiful connection between the two of them was amazing to watch.
I came home to Scott and explained how I had seen a small snippet of the old Amelia.

Animals have always brought out happiness in Amelia so we began moving our focus and conversations towards our pets a lot more.
The laughter that brought, surrounding the animals personalities, was another help.

Music.
Amelia has what she now calls her "Inspiring music".
We put it on loud and proud.

Maltesers.
I have taught her "emotional eating" and we now regularly eat them and talk about how shit things can be.

Shopping.
Amelia is a shopaholic but she now has a 2 week time limit after 1 outing before we go again.
She thinks she is funny to now ring Nana and say "We are going shopping on ..... day" so Nana can join her in hassling me to go! (Nana can no longer drive).

Amelia's school.
I requested a meeting soon after the hospital stay so I could explain what she had gone through, her limitations, anxiety and PTSD (even though staff members had visited us regularly).
Amelia demanded to come because part of her PTSD was that you DO NOT discuss the cancer or hospital visit.
Everyone told me she had lost even more control of her life and to let her go.
Give her some control back.
The 7 staff members in the meeting were amazing.
They explained the importance of Amelia telling them what, when, where and why.
She was in control.

Relay for life was a massive step forward for Amelia.
(A cancer fundraiser where people join a team and share walking from 4pm Saturday-11am Sunday).
Doing the first lap, the Survivors lap, was huge for her.
She even demanded to come to the planning/committee meetings.

Seeing her face at being the leader of the final lap helped me truly believe OUR Amelia was coming back to us.

Then began the excitement of little things.......
Birthdays, her school Ball and now Christmas.

We now speak of "the positives" on a regular basis and I can say Amelia is truly back.
Her quick wit and humour has us all in hysterics again.

Her empathy for others has also returned.
She insisted on buying Meredith a gift this week for her first Christmas without 6 year old BJ.
She knew what she wanted and spent her own money.

Yesterday, Amelia said to me "I am so sorry you have had such a horrible year with bad stuff happening Mum".

After a moments silence I said "You know what? I have actually had a really good year. You are still here".

We could have, would have, should have lost Amelia if all of the things that did fall into place in June hadn't happened.

Amelia is still here and for that I am grateful.

Have a wonderful Christmas everyone.

xxx

P.S Can no one say "Next year will be wonderful".
I did last year and set up this blog in anticipation.

"Hope you have a fucked up 2017" will be fine.

2016

Hello everyone.

Thank you for all of the messages, love and hugs over the last few days.

This year has been what can only be described as horrific.

So much pain and heartache from many around me, that my insides ache.

What began as "minor situations" (compared to what has happened since) has turned into catastrophic.

I am what is described as an "empath".

I listen to peoples stories and heartache and absorb it.

If you think I am being vain or trying to say "I am awesome" ........ please don't!
It is horrible and I honestly wish it did not happen to me.

Scott is used to me coming home, drinking wine and crying my eyes out over "this amazing person who is going through so much".

But this year has seen me absorbing my own daughters pain, stress and fear of dying.

For 3 weeks I did not eat due to her depression as well as my own over the shock of her cancer diagnosis while we were in hospital.

Visitors would come in and tell me off for not eating.

"Why eat when I know I will just vomit from stress" I would say!

3 whole weeks, 24 hours a day of being in the same room as her while she cried, groaned and asked for constant reassurance.
3 whole weeks of wondering if her underlying disease will NOT be the thing that shortens her life. That this malignant tumour would be.

Then my beautiful Meredith lost her 6 year old due to an aggressive brain tumour.
6 months from diagnosis.
6 fucking years old.

That is seriously shit.

And now Julia.

Very rarely have I found a connecting friendship in someone other than Scott.

I found one with Gary, Julia's husband, years ago.
He is someone I can just be "me" with and not worry about judgement.
He is a true friend.

Whether he speaks or not, I absorb his pain.

My heart aches and my emotions are all over the place, but I know that my true friends have my back.

Another friend has just found out her husbands "lump" is NOT cancer.

I could go on, but I won't.
This has been a seriously shit year for so many.

Tonight's blog is more about looking at yourself and those around you.

If a lump was found on your body tomorrow (which is a big possibility).
If you were confronted with possible death in the future, would you look really deeply into yourself and say "I am a good person and am proud of who I am?".

This afternoon I was honoured to be asked to meet the most amazing teenager that has had one single person turn her world against her with his lies.

I hope she listened when I reminded her that she is amazing and people can be judgemental and cruel.

Don't be one of those people.

Make your life amazing.
Have no regrets at the end.

Julia did that.
I am making sure Amelia has that too.

I will also make sure this young girl experiences the goodness that is in life too.

There ARE good people out there.
I truly believe that.

xxx

P.S The link below is MY song to Amelia.

P.P.S I am now adding it to Meredith, Julia, the teenager who has been hurt horribly and the other teenager who is going to help me help her find "the light" again.

Be a good person people.

You have ONE life.
Make it memorable.

xxx (again!)

https://www.youtube.com/watch?v=o2GFx7yrtMg

My Friend Julia

Hi everyone.

I am sitting here numb.

2016 has been a year of such emotional turmoil, my heart is hurting.

I cannot possibly list everything that has happened, so I am going to focus on what is happening right now.

My friend, Julia, has been battling stage 4 cancer for 3 years.

In that time she has changed dramatically for the better.

Julia is definitely a different person than the one I first met.

She has changed her appearance and her outlook on life.
I am the first person that understands what a "terminal illness" will do to someone.

It may not be me that has received it, but when your 13 year old does, it feels like it is yourself.

She has written a book and a blog with an extremely large following.
She has been on 60 minutes.
She won a nationally recognised award for her blog.

We once joked that we both "overshare" and debrief through Facebook WAY too much.
But we also discussed that people do not know our pain.

But people in our position will "drown" in negativity if they don't.

As one of her daughters says "She is famous".

But for those of us that knew her before all this happened.
Before she got the cancer diagnosis.........

She is Julia.

Just Julia.

Just like any one of us.

A mum to 4 little girls, 13 years and under.
A mum to a special needs child.
A wife to an amazing husband.

For the past 3 years we have all watched as she put up THE most fearsome fight against the cancer.
After originally being given 3 months, she has lasted 3 years.

That is phenomenal.

Every goal and milestone she aimed for she reached.
She fought with doctors and specialists to be referred for treatment that she believed would help.

It always helped.
It always gave her more time.

Every person that read her FB posts, blogs and book....she reached.
She touched and connected with them.

She actually saved peoples lives by talking about symptoms and tests people should be requesting.....

NO............ demanding for!

Now it is the end.
She could fight no more.

Our beautiful Julia passed away at 10:15pm on Sunday 18th December 2016.......


Dear Julia,

Thank you.

Thank you for showing me how to be an individual and live my own life.
I may be part of a beautiful family, but I am still me.

I still need to separate myself and strive for my dreams.
My hair and clothes may be a stepping point, but it is also the metal process.

I am and I can be.

I will and I should be.

Recently as you lay there and told me your fears and regrets..........
I cried.

The fear of everything ending is all consuming in such a moment....

I learnt that looking death in the face is so incredibly frightening.
I had to leave the room to fall apart emotionally.

But Julia, you did good in this life.

You have created 4 amazing girls and the foundation you installed in them will be with them forever.

You did so, so, so good.

But your comment "But I am their mum and I am not anymore"..... when you were so sick.....

Yes you are and you always will be.
You will be their mum forever.

No one can replace you.

You started the process and we will make sure it continues.

They will never forget the amazing mum they once had.

The mum that will lives in their hearts and their minds.

The mum that created them.

Thank you for letting me try and do my best to help Gary and the girls in the last 3 months.
Thank you for taking my phone calls to ask your opinion on Christmas gifts for the girls and whether you approved of employing people to come and help in your house.

Gary had the answers, but involving you was paramount.
As you said "I am still fucking alive!".
You were both a partnership and you were not to be secluded.

I regret deeply not helping out sooner, but I promise to make it up to you and Gary now.
I endeavour to be a better friend to those around me in future.

Time lost is paramount in my mind right now.

Gary will be fine.
There are so many of us that are going to make sure of that.

We adore him, so it will be easy.

I cannot imagine what Gary is feeling right now, but I know what "true love" is.

You gave and showed him the love of a person that many never experience in their entire lifetime.
It is a feeling and a memory that will last with him forever.
He will use your "energy" to carry on.
He is an amazing dad and I know he will continue doing the amazing job you both started together.

Scott and I are one of many that are going to support him through this incredible pain.
We both adore him.

You told me recently "God he makes me laugh. He always makes me laugh. But he is so sad now".

He loved you SO much and will continue to make you laugh wherever you are.
I truly believe that.

He is sad because he was losing and just lost the most amazing person that he has ever given his heart to.

It is almost fate that we were at our first Christmas Carol Concert last night.
I thought we would all enjoy it, but as it was our first time, I had an open mind.
ALL of the songs were very suitable for church and not a person that is not religious.

I SO know you were not religious.

Amelia suddenly yelled "THIS IS CRAP!. I DON'T KNOW ANY OF THE SONGS!".
She wanted "Jingle Bells" and "Santa Clause Is Coming To Town"!!!!!!!!!!

You would have laughed as much as we did.
Little, quiet Amelia reacting at such an event.



Thank you Julia for teaching me how to LOVE     FIGHT    and     LIVE.

All those words needs to be separated for their importance,.

Love you xxx

R.I.P. Julia.
Thank you for entering our lives xxx

P.S Don't forget what I said about Amelia.
No better person to be waiting for her xxx

P.P.S I know how much you loved this song.

https://youtu.be/GYMLMj-SibU

Goodbye and I will see you again xxx
    

Emotional Health

Hi Everyone.

As you all may know, this year has been a big year.
Unfortunately it looks like it may get even bigger.

It brings me to address a subject extremely close to my heart.

EMOTIONAL HEALTH.

It is not widely known about or discussed.

Emotional health is all about your "inner being".
It connects self esteem, self worth, feelings and personal growth.

I honestly and truly believe it develops constantly from childhood and continually through adulthood.

I do not think it happened with Scott or myself in childhood and am constantly ensuring it happens with Amelia and Tom......
NOW.

It may be late, but it is happening with Scott and I now and I am seeing the benefits everyday.

EVERY SINGLE DAY.

Talking.
Honesty.
Open conversation.

It connects your social skills, helps school learning and even physical growth.

It can also help a marriage or relationship greatly.

If you are not happy within, nothing else with develop healthy.
Seriously.

Our house is now all about this and it is working.
I honestly and truly believe this.

If you are knowledgeable and talking about issues then it does not spiral into a dilemma.

It begins with a simple "How was your day?'.
And "What happened".

In our case it is also "The doctor said this or that today" and we see where the conversation goes.

As a family.
No distractions.

Honesty.

Just eating dinner.

Amelia and Tom both know that Amelia is going to decline further and will die in the future.
They may not like it, but they have acknowledged it.

I purposely did not say on here "accepted or understood" because that is part of their personal growth in emotional health.
They are not capable of either yet.

It is all about honesty and wording at the stage someone is at.

OR the stage the situation is at.

We have discussed the fact that Amelia is dying with both children individually (and that has been documented on here) BUT I can see where both children have scaled those words back to what they are able to comprehend.

I accept and totally understand that.

BUT Amelia and Tom have also changed dramatically in their behaviour towards one another.
They were always close, but.....

They genuinely listen and acknowledge each other now.
They write letters or say words they would not have said before.
They cuddle and lie in bed together.
They ask to attend outings and events together.

"Can "he/she" go with me?'

It connects to my original motto,
"No regrets at the end".

I can see them doing it, without me suggesting it.

Their "child" minds have grasped it.
The innocence and the reality has connected for them.



Emotional health is ongoing during someone's entire lifetime.

But it is up to the adults to instigate to a child or children everyday
"I am here and I will listen.
It does not matter how small, negative or positive the story is........I am here".

You may have no idea the importance of these simple questions.......
But it will not only mean everything to now, but also in the future.

The small things to a young child are considered HUGE.
Now. Acknowledge them now and show you are listening.

When they grow up, the small things (to possibly them) like drugs, alcohol and mental illness will turn out to be the huge things that they will REALLY need help with.

Be open to when they get home from school.
Be open when you are getting dinner ready together.
Be open to when they are going to bed.....lie down with them if you can.

Encourage them to write their feelings down....... even if they keep it to themselves.

Encourage them to talk, even if it is useless banter.

Laugh and joke with them.

Demonstrate it yourself.

Give it a few weeks and they will join in.

WE are creating their minds for the future and it is SO important.

And when new situations arise, good or bad, TALK.

Love you all xxx