Cigarettes

Hello dear friends,

Just a quick post here because this little chicken is exhausted!!!!

(edit- seemed to have taken 90 minutes so far!)

Most of Amelia's and Tom's Christmas presents are clothing, bedding and shoes that parents would normally buy throughout the year.

I would normally buy it anyway, so why not get it at Christmas!

We just give it to them at Christmas (and it is more name brand than normal!)

Today was wash day and get them put away into wardrobes amongst the general Christmas clean up!!!!



This is just a really quick post to thank you all for everything.


Seriously thankyou for the support and love.


Thank you for putting up with all the crap we have been dealt with (and my verbal crap)  and supporting us in all that comes next.

A massive HUG to those that that have been through the stress, pain, heartache and
"FUCK YOU".

It will continue coming and the more we smile and laugh, the more amazing life will be.

One life.

And the more "FUCK YOU" because it will continue.

Tom and Amelia have both shown Scott and I in the last 18 months that anything and everything can be turned into a positive.

We can work through it and add any medication, appointment and hospital stay to our regime!

Someone recently came to our house for about the fourth time for a visit.

She said "I never knew there would be so much laughter, sarcasm and affection here.
I thought it would be really sad".

(She is obviously nuts).

Amanda (me) has obviously not shown the paranoid, stressed and crazy part of herself enough yet (no mention of anyone else!).



Anyway...

This Post.

Tomorrow marks 7 weeks of post cigarette smoking.

NEVER  EVER  ACHIEVED.

HUGE

MASSIVE

We have tried to stop this addiction too many times to mention

(this addiction has been compared to heroin!)  

our attempts? sooooooooooo many times that it was a joke in the amount counted.

I think I got to 1039 attempts!

Patches failed.

Champix failed.

Cold turkey lasted 3 hours for Amanda - me!!!!!

(confusion occurring on who, when, why and how).



I am not going to list everything that has happened in our lives to stop smoking!!!

You all know the crappy list.


Going outside to "calm down, leave the hospital, hang up the phone from a doctor,  receive a pathology result, start the day etc" ...........

was a smoke.


WAS A SMOKE.


A child that you gave birth to is suddenly terminal at 7 years old in December 2010.

When you have no F'N idea.

Smoke.

Suddenly another is T1 Diabetes on Christmas Eve 2013.
When you have no F'N idea.

Smoke.


The final straw of smoking was the cost.

SO MUCH money.

$43 a packet of smokes of 40!


I know many of you need to recover from that comment.


But it is an addiction that many of you would never understand unless you lived it.

In the last 2 years it has risen in cost dramatically. Stupidly.


For those past and present smokers, remember when it was $7:50 for 40?

It is now $43.00.


Another final straw for us was also the cough and breathing and pain from yourself, in the chest laying down.


Overnight thinking you were having a heart attack.

OMG the slight pain and breathing.


38 years old and having trouble breathing?

The final straw was my own dad on his hands and knees asking "who is going to look after the kids when you are gone?".


"I can't".   he said.


He is pretty much the only one.


My dad has been the only regular constant.

His own body is shutting down.

Someone who is there every single week for us.


EVERY SINGLE WEEK.


He can't care for them anymore in his 70's.



Scott was 40 smokes a day.
I was about 20.

The money.

The debt.



"I am sorry Amelia and Tom , we cant afford what you want.

We have no money.................."



Is what we regularly said.



"I just need to stop at the shops for a $43 pack of smokes though on the way home"


Silently stressed.



This is what we regularly said and had no idea how we felt.


SERIOUSLY?

How fucked is that?!


I don't think I need to say anymore.


But maybe we do.

Maybe we did not and do not know how to stop.


We had tried and could not seriously function when we tried.
The racey mind and vision.


We would last like 2 hours and be in the car to buy some.

If you do not understand cigarette, heroin or ice withdrawn, you would not understand this.

It is shit.

And how cigarettes is legal, we have no idea!



We experienced serious withdrawal vision of....
Anger.
Blurred vision.
Agitation.

Crawled up in a corner........


The withdrawal from heroin or ice is exactly the same.
How is this nicotine shit legal?


We were so incredibly disgusted in ourselves.

But we did not know how to stop.

It was so upsetting!



After 28 years, cigarettes were equal with sleep and food in our daily requirements.

28 years of all day and everyday.

The budget included smokes with the so called "essentials".

We are now so ashamed.



It got us though Amelia's "terminal" diagnosis (thank you Kim for letting me have one or 50) and Tom's diabetes.



I am that upset now, SERIOUSLY, it is so embarrassing.

It was our food.



But then this one man changed everything.

The Hypnotist we booked............

A man that does stage shows, travels to Las Vegas and does AFL Club parties etc




7 weeks post hypnotism.

We feel like we are part of some sci fi movie where someone has opened our brain and removed the smoking component.



It is still hard.

But 85% less hard than normal.

We still fight with withdrawl, but it is minor compared to the other times.


It is actually easy compared to the other times.



But now you just eat or walk the dog or go to bed to battle with the withdrawls it is SO minor.


I am now the size of a house, BUT for the first time in FOREVER I don't give a f'n shit.

I know that weight can be lost, but smoking felt like it would never happen.

NEVER.


And it has.


IT SERIOUSLY HAS.

We have actually quit smoking.

The kids are still sceptical about us going outside, but Scott and I are like "you have no idea. It is like it has been taken out of our thinking!".

They will not understand for a while, because it is all that they have ever known!


Another finally.......


Tom's school report says he is 12- 18 months months ahead academically in reading, writing and maths areas.


We actually no longer care about this for his future.

And I mean that seriously.


Many people at his school (past and present) have pointed out (or messaged and emailed me) many other assets that they recognise in Tom that will be his assets in life recently.

Past and present teachers that want to add to the so called "portfolio" I am learning about.

It has been incredible and so emotional.

As everyone who knows me knows, I have read messages and letters that made me literally shake.

This child (Tom) caused SOOOOOOO much trouble earlier on in his life.

But we tried our best to stay strict and follow through with discipline.

I spent years holding his bedroom closed for timeout, even while people visited.
I took him home from birthday parties when he behaved badly.

The worst lasted 6 years.

I remember asking Scott "what does it mean if you love your own child, but don't like them as a person?".

(So many of you struggle on here with your own boys. You have messaged me or told me.
Please screen shot this or write it down. Look back on Tom and what has changed.
I honestly do not believe it was us. It was just him needing direction, structure, boundaries and "missing out").

I so incredibly appreciate all of the messages and emails.

He is starting to become what we spent 6 years creating.

Everyone seems to believe he will be so incredibly driven and determined that he will be whatever he wants to be.

He will be kind and caring and defend those being hassled.

(He already is from what I am being told and messaged).

I have received so many messages from parents this year complimenting him in various situations defending those being picked on.

"STOP" he apparently yelled and glared at bullies in front of everyone, witnessed by students, staff and parents this year.

I have actually asked staff and his friends and they described this.


Who could possibly ask for anything more?


Amelia is going to her first respite weekend in February.
It began as 2 kids from school that can verbally talk.

Amelia asked for me to approach the parents of 2 more children to come with them.
They have no communication skills.

One talks through a communication device as best as he can and the other cannot talk at all.

For the one that cant talk at all, I approached his mum and told her Amelia's suggestion for the weekend away.

"What?
Are you serious? "
 she asked.

"No one has ever asked to be with him and socialise with him.'
He is 15 and no one wants to be with him".

Then the mum began crying.

Well Amelia has asked for him to join her.
She just asked because she wants him there.

Imagine that.

As always I wonder, why have I been GIFTED these 2 kids.

I regularly feel like the postman or courier for Amelia and Tom.

But then I see other people and draw from their strength.

Is that my role in life or is it my energy for my personal weakness?
My role for the person that I needed to be?!

Very long "quick" message.

Sweet Dreams xxx

Love to all

Merry Christmas 2017

Hello dear friends,

Merry Christmas!


I am so over listing my pain and sorrow of virtually caring for a child in constant palliative care.

No one wants to hear it and I know longer want to write it.


Amelia is SO much more and so am I.

No one will ever understand and I would never expect them to.

From now it will be facts and positives only!

ENJOY!!!!!!!


It is after midnight in this little house of ours and I want to wish everyone an awesome day tomorrow......................................................

today?!


It has once again been a "topsy turvy" year in this house, but as we all now probably realise,
it always will be.

7 years ago today we were mourning the diagnosis of a terminally ill daughter (aged 7).

Still alive aged 14 now!!!!!!!!!!!!!!!!!!!!!!
DOUBLE the time.


4 years ago today we were living in hospital with the diagnosis of a son with type 1 diabetes (aged 7).

Still as active and loud as ever now!!!!!!!!!!!!!!!!

The medication and food diary becomes routine for both kids!!!!


EVERY year Amelia plans Christmas Eve and Christmas Day as soon as her Birthday finishes.......

In JUNE!!!!!!

We have completed her "list of requirements for Christmas" to her happiness..... I think so far this year!

First is Santa's list.

Next is Santa's runway!

Santa's runway was quite extravagant this year.

It involved 3 houses with google map drawings across the road.

(arrows,  please go here next;  pictures and offerings of carrots...... quite high tech).

Unfortunately due to circumstances out of our control this year, Tom found out about Santa and his true magic.
None of us were near the stage yet (especially Tom), but it happened.

After 48 hours (and constant questions of  "EXPLAIN?!") our amazing neighbours looked after Amelia while we explained "STUFF".

After 2 days of devastation, Tom did what he always he does.........
He turned it into a positive.

He would help us be Santa.

Be SANTA!

His ideas and his excitement was inspirational.

Tom has insisted on wrapping ALL of Amelia's Santa presents.

At 10pm tonight he was helping build the swing set across the road with massive enthusiasm for kids 6 years and younger!!

He insisted on helping me grate the carrots and leave the reindeer poo at all the neighbours driveways (something I have done for years).

"Teach me please" he laughed!

So we did it whispering!

But as Scott and I held Amelia's sack open and Tom excitedly threw everything in at 11:30pm,
I really started crying.

I was seriously pathetic!

"Why" they both asked.

"Because this is huge and the end of something special" I said.

"And he is taking it too damn positively!!".

"It is ok. All my friends in class explained it nicely".

"Thank you mum and dad for letting me help you with this.
I now know how much effort you go to.
I know this is special and important for future memories for you and me about Amelia".
Tom said.

(I seriously do not make this shit up. Tom will read this one day and verify).

Sometimes what he says sounds so damn rehearsed, but it is genuinely him.
To be so sad and devastated and then to be so positive!

Finally....

No one knows except 5 people....
Not even Tom...........

RCH want Amelia "swabbed" for an antibiotic drip for an infection under the skin.
It was suggested in a call on Friday 22/12/17.

This would mean a stay in hospital.

"Not Christmas" I said " PLEASE".

"It would destroy her. Please wait till next week".

Thank goodness they listened.

I am just on watch for increased tiredness and major loss of appetite and fever.
(mastitis like affect).

We are taking a general oral anti while we wait.

We are now seeing them 28/12/17.

We are going to SO enjoy watching Amelia open the presents from Tom and Santa tomorrow and cross everything we do not need to move to a ward next Thursday.

Amelia has waited 6 months for today!!!!!!!!!!!


MERRY CHRISTMAS EVERYONE



PLEASE appreciate every single day.

LOVE to you every single one of you.

This is probably my Grandpa's last Christmas Day.

But as he said
"I have had 91 of them.
I have lived my life.....
Amelia is only 14".

xxx

Hello Dear Friends,

It is entering the end of 2017 and so many of you have travelled such an emotional journey with us since the beginning...2011.

So many have travelled your own with us.

Emotional to us means...

SAD-
Cerebral Palsy (2006)
Amelia's diagnosis of Ataxia Telangiectasia (2010) and
Ovarian Cancer(2016).

Three of the biggest scares.

(Regularly mentioned "go home and cherish her. We don't know how long she has").

Amelia finding out she is Terminal and the amazing Scott coming in and doing the most magnificent explanation of research and health and "we don't know".......

(If I seriously did not have him........).

Amelia slowly lost the ability to walk during grade 1..........

(many of you saw her at school, walking and playing - being pushed over because it was funny to watch her fall by nasty kids).........

dancing, climbing and running before the walker.

Amelia in AFO's,
then a walking frame and
then a wheelchair as her legs froze as the disease of Ataxia telangiectasia took over.

My torment as a mother feeling like we are in palliative care indefinitely began.......

We still are.

BUT I will have that over anything else.

ABSOFRICKENLUTELY.

To have this precious child here beats any stress, depression, torment and pain.

Even now I feel like I have a toddler constantly needing help.

When will she be taken?

No one knows and can help me with an answer.

But I also DO NOT want an answer.

I only want to know what to avoid.

KEEP HER HEALTHY is all they say.

KEEP HER WALKING so her legs do not go numb......

I now need a new left hip and back fusion in the lower disks.

But it is worth it.
SO incredibly worth it.

KEEP HER WALKING.

Her legs can still walk and are walking tandemly with mine.

Tom dealing with the mental pain and of watching Amelia and knowing the truth so young....

and working through it better than anyone else........

ANYONE ELSE.

Blowing people away with his love for his sister.

He is amazing and is going to be THE most amazing adult.
Is helping us ALL get through.

He is A PAIN IN THE NECK in a million other ways....

BUT the way he is with Amelia, would melt anyone's heart.

To find him feeding Amelia (while I answered a phonecall) when he was 6 would melt the hardest of hearts.
Without me having time to ask.
It now happens regularly.

Tom has continued on this same pathway.

He is supposedly part of the "cool" kids and yet is well known to still stick up for those that are "quirky", "coloured skin" and "different" by yelling "STOP".

(I have collected many, many messages from parents over the years about this).

The kids supposedly know and listen and do STOP.

Proud is not strong enough a word right now.

And Scott leaving the corporate world because of the overall pain and time off needed etc
It is shit and also amazing.

Life is looked upon differently now.


HAPPY-

(Amelia's regular drinking (plain water) has just been take off her).

Next it will be eating.

Her swallowing process is shutting down.

It is the process for her disease.

Horrendous in "quality of life"

(She is a mess about it.).

Amelia's sarcasm and humour and most recently FOUL mood helps greatly.

This one is incredibly hard to describe unless you witness it.
It comes so incredibly out of the blue, we all fall over!

IF you have stuff taken off you (that is normal-eating-etc) you crack it.

You know what is happening.
You absolutely crack it.
- UNDERSTAND.

Disabled people regularly have a "label".

A-T more so.

One where they cannot talk, understand, do what they want or communicate

Amelia's school teaches something SO different.
They teach these kids how to do all of the above.

The commercial on TV we all waited so patiently for a few years ago came.

Melbourne zoo with Howie and Kate Howard.

Disneyland.

Anyone who has ever entered our house.

We have LOVE.
We have PROTECTION.

We hear it regularly - the difference to so many other families and also similar.

(we also have depression, meltdowns and anxiety!).

We have REALITY.

Soooooooo much more to write in the coming days.

Love to you all.

xxx


we will get through this.

Honesty in the coming days xxx