Evaluating

Hello Friends,

As another year draws to a close, I reflect on what has been another tumultuous year in hospital stays and appointments.

I am happy to say that everything has been settled with medication though.
We now have a very long list of medications that Amelia needs to take daily.

I no longer expect any year to be "clear sailing" and hospital free.

Amelia now has Ataxia Telangiectasia, Type 1 Diabetes and Gastroparesis.
She is also on Ovarian Cancer survivor.

Our 11 year old son also has Type 1 Diabetes.

Amelia is a different child of late.
Her sense of humour is in abundance (wish I could have filmed her reaction to Nana's banana fritter and 2 scoops of ice-cream today at Chinese!).

Amelia is talking non-stop and laughing constantly.
She is questioning things and wanting to know everything.

After a recent discussion, Amelia tells me "After what I have been through recently, I want to laugh lots and live my life happy. This is the new and improved me!".
I love it!

Tom is going well and we have finally decided on a High School for him.
It is a great relief to know where to apply now.
I love hearing about all of his friends and their antics!


Scott and I have come to a realisation recently and I hope it will be like a new start for us individually, as a couple and as family.

Recently I had a birthday.
I suffered another bad depression spell leading up to it.
I ended up not wanting to celebrate it and just wanted the day over and done with.
The kids did not really pick up on it, but poor Scott cops all the comments and knows that I am not doing well.

I saw 43 as a climb down the mountain.
43 as the downward climb on a pinnacle of life.
(Silly I know).


We are just EXISTING..... not living and loving life.



Scott and I get up everyday and do what "we have to do".
Medications, calls from schools (which is daily), toileting showering and entertaining.
Medical appointments and running a house.

It is monotonous and draining.
It is repetitive and boring.
I used to love getting out of the house and working.

I looked at my birthday as "Why?"

Why have I been gifted such a horrible and painful life.........
That will only become more painful in the future?

Why am I looking after a 14 year old child with needs like a baby?

Why am I going to have to nurture her through at the end?

I cannot sleep in, because she needs to go to the toilet.
Then she needs tablets and needles and food within a certain timeline.
Then lunchtime and dinner are the same.

I cannot rest, because she wants entertaining.

Tom wants someone to play basketball and cricket with in the backyard.

I am tired.
I am physically, mentally and emotionally exhausted.
I know Scott is too.
We both struggle to smile and laugh now.

Tomorrow night we are being hypnotised to quit smoking.
Hopefully it is the first step to living, creating and loving our own lives.
One thing stopping us from dealing with the daily regime.

We are busy creating an amazing life for the kids.......
Why not us too?

xxx

The Mother

Hello dear friends,

I am writing to you all from the point of view of a full time carer and average woman.

A mother and a person.

I am NOT writing about my children.
Hopefully that will not get me into trouble!

I have decided that it is time to make a few changes around here as well as address a few personal issues.

Amelia and Tom are doing so incredibly well in so many areas, that my own personal life has come into focus.


I have gone crazy.
Literally.

I feel like I am possessed by the devil or something.

My mind is racing, I talk like I have ADHD and I verbally say ANYTHING!
I know this and I want to change it.
It feels weird.

For a lot of this year, I have shown my impatience, anger and low tolerance.
Whether it be in person, online or in my head.

It appears that I may be going through Early Menopause.

(Scott has cancelled the scheduled exorcism, thank goodness!).

I have shown displeasure at so many things that I do not have enough time to write them all.

Seriously.
It has been REALLY bad.

I thought that after 7 years caring for Amelia, full time, that it had all caught up to me.
I was seriously packing my bags to start a new life.......in my mind!

(and other crap that would scare you).

This year has been a serious mind fuck on so many levels and so many things have happened, I thought everything else was to blame.
My life has so many answers towards my behaviour, BUT all my behaviours were totally out of character.
Totally and absolutely.
I could see it and did not know the answer.

Scott started talking to me calmly (otherwise I probably would have punched him for the mood I was in) about early menopause.

I read the symptoms and it is "spot on".

We just need to wait on the blood tests now.
(otherwise I think I may be fucked and locked up in a mental institution).

After reading information of women selling their businesses in panic and leaving their families for isolation in country France, I finally feel sane.

Sane, that I am not alone.

Early menopause may be the answer to my recent behaviour.

(it looks like about 7 months that I have been REALLY odd. No jokes from close friends!).


Amelia requires constant care and persistent timing for needles and food.
She is intellectual and requires constant stimulation.
Even having visitors over or going out to friends places has Scott and I constantly helping her engage.

I give everything I can to both kids, outside of the basic house chores.
I want the most amazing life and opportunities for each child.

But recently I have put my hand up to both of them and said "No. Stop".

I am human too and I am mentally, physically and emotionally exhausted.

I do not have time to wash my hair or vacumn the floor.

I have finally accepted that I need help and to work through finding ME again.

Due to positive and healthy discussions with the kids recently, everyone is very excited about the meeting later this week about a fully funded carer to come and help me 10 hours per week with Amelia.
They can entertain Amelia while I fold washing, cook dinner or take Tom to kick the footy.

All the things Amelia calls out to me for during ......or I feel bad about .........or just generally do not have time for.

AND it is fully funded.

Part of my stress on financial and health issues will also be kind of taken care of with a booking made for hypnotherapy to quit smoking.

Both Scott and I.

A proven record and excellent reviews.
(we may be a test case with our stress levels!)

This is my life too and I need to actually live it as well.

(No children were really mentioned during this piece).

xxx

Having a break

Hi friends,

I have decided to take a long break from blogging indefinitely.

Times have changed, the culture has changed and our family has changed.

In December of this year, it will be 7 years since Amelia was diagnosed with Ataxia Telangiectasia.

So much has happened during that time and your support has been indescribable.

Amelia and Tom now take great offence to me writing about them.

People are more confident and willing to disagree and argue about the sensitive topics I write about.

Everyone is allowed an opinion and I will never disagree with that.
I just do not have the time or the energy to monitor what is said.

I am making a long list of what I personally would like to address and achieve, in the near future, and I am excited about it.
I have repeatedly lectured you all about living life and making every second count.
It is now my turn.

As a mother quite often does, I have made sure that happens for everyone else, except me and my marriage.
Scott and I are still amazing together, but we have become partners in parenting a 14 year old that still has the needs of a baby.
We do not have time alone or discussions without children.

We will finally be addressing the need for a permanent carer (that Amelia will get to know over many months) so we can actually have a night alone once a month.
Currently it is twice a year.

I cant even fold washing without Amelia constantly calling out to me.

This will require many forms to fill out and to source funding from goodness knows where.

I have enrolled in a "stress on carers" course and am aiming on 1 walk per day to clear my head.

Writing a blog as intense as this one takes it's toll and I need to start living again.
We all know I have lost many friends.
I now have panic attacks and struggle to leave the house.

I know I do not "publish" very often, but I am always writing........just not publishing.

I need to stop and smell the flowers again.

I need to find Amanda again, because at the moment she is lost.

xxx

Palliative Care UPDATE

Hello fear friends,

My last post created quite the reaction on Facebook.

To the point that I had to delete it and all of the amazing comments of love.

People that have travelled palliative care, people that are travelling it and those that believe no one should be travelling it commented and it became quite upsetting.

The comments were heated, full of passion and many were let hurt.
But I know they only came from personal experience and knowledge.

This post is not to recreate that upset.
AT ALL.
This post is only to explain my pain, of the previous post, further.

If you want to argue, do it elsewhere.

Amelia's Project is selfishly about her life, our family life and my emotions.

Sorry if that offends.
But it is not appropriate to argue and be offensive towards others on here.

Thank you to my mild mannered, logical and extremely kind husband for stepping in.

He NEVER comments until he is pushed to be horrified.

It is kind of humerous that when we met at 15 years of age, I was the shy naive one.
Now the roles have reversed.

But as he said on Amelia's Project page (in response to one of my posts) writing is my only outlet.
Don't make it a vicious cycle of nasty comments to make me stop posting.
Nasty comments get you nowhere.

I struggle with the scenario of our life on a daily basis.
His comment actually meant so much to me.
I was a mess for the reasons I had written.
He was the only one to see the affect on me the day after.
He was the only one to see peoples comments and how I reacted to that.

Scott has no outlet.
He is just kind, sweet and amazing.

Amelia has written the most amazing piece about him for Fathers Day, it would make anyone's heart melt.
Actually the staff member who helped her write it has approached me and asked for him to come into class one day.
She wants to meet him.

She has never seen Amelia speak so clearly and passionately about anything before.
Her words were "He sounds amazing".

He is.

He is very different than when I first met him, but MY girlfriends still come to "speak to Scott".

He is sweet and caring and logical.
He will tell you like it is.
He is an amazing judge of character and will call someone out for what he believes they are.
He is always right.

Me, not so.

But to return to my original post.......

When palliative care was mentioned at RCH, there were many other words mentioned.
When I came home Tuesday and wrote that post....

I did not mention them at the time, because I was SO overwhelmed with emotion and processing that my post came out as a MASSIVE blurrrrrrrrr.

I needed to write to process and understand what had occurred.

When you have been living with a child for almost 7 years with a supposed terminal illness, you do enter a daily life and routine that helps you forget the logistics of a complex disease like Ataxia Telangiectasia.

Breakfast, lunch, dinner and sleep became normal.

Laughing, living and existing appears normal.

In our family, laughter and sarcasm occur daily.

Being proud and congratulating each other is a regular occurrence.

The suggestion of Palliative Care was sudden.
It shattered my window of routine.


BUT it was the words in our appointment of "inevitable", "realistic" and "one day you will choose to cease treatment" that broke me.


I seriously stared in shock.
How could you ever cease treatment?!


DO NOT ever destroy hope in a parent!

Getting Palliative care onboard was scary and it was not explained that it could be for 30+ years.

The only people I know that have joined palliative have since passed away.

That is the point I came to you from.

Just remember sometimes I post from a point of possibly no return.

I can be so incredibly low and devastated, that I see no way to help Amelia and us.

Writing brings me straight out of that mindset.
It helps me see properly again.

It may not be correct and that is totally ok.
But it is also quite accurate in recording the journey of a mother going through what we are.

Just imagine a brain and thinking actively typing on here!

Welcome to me!!!!!

Amelia is not going anywhere at the moment.
It is just a new team to help us.

It was not explained and I was uneducated.

We will not be "ceasing treatment" anytime soon.

Thank you for listening

xxx

Heartbroken

Hello dear friends,

Please be warned that this post may leave you feeling the way I am feeling right now.

Sad and heartbroken.

I am not looking for sympathy or gossip mongers.
(believe me, both have appeared and been suggested before).

I just write to expel stuff from my mind.
That is all........



Today we ventured into RCH for another long day of appointments.

With so many departments dealing with Amelia right now, the appointments have multiplied and therefore we have to attend more regularly.

Developmental Medicine - supposed cerebral palsy/rediagnosed with Ataxia Telangiectasia 2008
Immunology/allergy - 2010
Oncology - cancer 2016
Gastroenterology - gastoparesis 2017
Endocrinology - Type 1 Diabetes 2017

As there is now a new department at RCH (only heard about on the news) called "complex care", you can understand my push to be referred to it.
It allocates 1 nurse to you, to try and collaborate and communicate for you.
To be the central person for all departments.
All of these departments have no direct number and just book appointments at their own whim, for your child, before looking at what other departments have done in advance.

Today 2 appointments were booked minutes apart.

Recently, we had 4 appointments made, on 4 separate days...... One after the other.
We live 75 minutes away, so that is just ridiculous.

One nurse (in complex care) would co- ordinate all of these appointments into one, or at least 2 days.

Everyone on here has followed the torment of the last 15 months.

We went from dealing with A-T only, to a hell of a lot more.

I keep thinking that the feeling of the heart racing, the uncontrollable shakes and the brain in overdrive (cannot think properly because the brain is racing) will become better controlled with new development.
It is the only way to describe panic.
Or maybe it is just my own coping mechanism in general.
The loss of friends because they cannot interact with you.

But it doesn't change each time,  and I realise now that it never will.

This person (my spirited Amelia) that I have encouraged, supported, fought for, stood by and treated as part of my everything, is my child.

This person that I have given up paid employment for, lived with 24/7 on so many occasions and devoted myself to, IS MY LIFE.

Just a few days ago, after so much sickness and being home with me, I said to Scott,
"It is not natural to be together so often and for such a large amount of time" (months).

"She is losing her sense of identity and so am I".
"We are both going insane never being separated!".


This past week has grounded me and reminded me, personally, about what is important.


Amelia's younger brother requested to present a speech (that he personally wrote) to an audience.

He had never requested or shown any interest in something like this before.
It was all about his feelings living our life and how Amelia was his inspiration.

We had to leave early because all of a sudden I chose to lose it and cry uncontrollably.

I think some people understood the words,  "I am just so proud of him".
It was the most amazing speech I think I will ever hear.



And today........


I was asked to give permission to refer Amelia to the Palliative Care department.


Yes.

Process that if you are a mother or a father.

Just stop and think how you would cope.

Process that if you have lived the last 6+ years of tried to be normal.

Constantly working on the positives and HOPE.

I have tried so fucking damn hard.

Living 24/7 with this amazing kid that inspires every single part of my existence.


PALLIATIVE CARE.

(I can only go by their own medical research and my own.
Things seem to be happening a lot quicker and differently for us).

Supporting and preparing you for death in the future.

Possibly the near future.

A doctor suggesting NOW is the time.


There is so much more that was said and so much more provided afterwards to defend this request......

I just cannot describe through my tears everything.

I am so sorry.
I just cannot stop crying.

I just bring to you a mother shattered.

TOTALLY shattered.

Nothing can ever prepare you for the next stage.

She is my everything.

I just love her with everything I have.

Look at the photo at the top of this blog and tell me you could understand something like this.
True happiness.

Thank you for being there.

xxx

Time and Development

Hello Friends.

Hard to believe that it is August 2017 already.
The time seems to be passing by faster every year.

Amelia has entered a new stage of her growth and maturity that brings me to comment.

She is now more fragile and delicate in her emotional health.
I interpret this being hormonal (as she is now 14 years old) and battling mentally with her disease and development.

Recently in hospital, she hit me.

Amelia would be horrified to know that I mentioned this.
She is incredibly upset that it even happened.
BUT one test that the doctors wanted, required me to do it.
It was humiliating for her.

I have explained to her that she has no way of expressing her anger, frustration and humiliation.
I have explained that she has learnt from her mistake and it won't happen again.

The day after, I had quite a prominent scratch across my face.
It is kind of funny to be consoling the perpetrator, instead of the victim.

I hope that we have reassured Amelia enough to understand how she can expel this anger in the future.

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Something that is always evident, is the usual right of passage for a mother and daughter.

I understand that Amelia and I spend an immense amount of time together and growth and development (because of her disability and disease) will never be equal to another 14 year old.

I personally only know this kind of situation with her now.

Unless she is at school, or one other persons house, it is our life.

Recently I introduced Amelia to a movie series that was unashamedly a massive part in my life a few years ago.

The Twilight Saga arrived just after Amelia was diagnosed with Ataxia Telangiectasia and gave me the happiness, excitement and anticipation I so desperately needed.

A distraction and something to look forward to.
Something else to think about.
Something to talk to friends about.

I read all of the books (sometimes till 3am!) to escape my real world.

I even went to a midnight screening of one of the final novels (and woke up to take kids to school!).

Over the past 2 weeks Amelia has watched all of the movies.
We finished with the final one tonight.

Amelia has shown great interest and excitement at the end of each movie to watch the next one.
She has questioned the characters and the meanings behind storylines.

Everything I did.

The reason why I started purchasing the books (because they always hold so much more information).

Amelia is now researching audio books to hear The Twilight Saga.

I am so incredibly grateful and privileged to have been a part of this journey with her, that I myself took.

I feel like I have lived something with Amelia that always should have happened.

I won't possibly get to live most of life's journeys with her.

It sounds silly.

But I won't get to enjoy the first boyfriend, the first kiss, the first job, marriage etc..........

I got to see her excitement over something I also felt immensely about.

I love this kid immensely and will value whatever time and special experiences I get with her.

xxx

Tom's support network

Hello....again!

I am feeling rather sentimental tonight.

Tom just played the final footy game for the 2017 season today and I have spent the entire afternoon feeling grateful for many reasons.

We have been fortunate enough to have people in Tom's life that may do things that we cannot.
Things that we cannot offer or have time for.

Today as we all wore yellow armbands and the team wore yellow face paint it reminded me of last year when the team supported Tom by doing the same in pink.
Two days before Amelia's big operation to remove the cancer tumour.

Today we did it for a players 8 year old cousin who has incurable leukemia.
Someone this child adores and has grown up with.

We were reminded that we are "family" and that we all support each other in hard times.
It was very emotional watching everyone band together for one players family.

I remember the tears from parents last year for us.

I have quite a significant "family" around Tom that comes from many directions.

Role models that he grows attached to and knows that they are always there.

People that know his situation, offer praise, constructive criticism and guidance in so many more ways than they probably even realise.
To Tom it is everything.

These people are showing support, love and mentoring in our world more than any of them realise.

(Even if their mum writes crazy stuff on here!).

These people are helping us guide Tom in a difficult world.
They make every week happy and full of excitement for Tom.
They make him think, question and plan.

They are helping to develop the adult he will be in the future.

They are all helping him to get through what may be considered a difficult childhood.

Thank you Megan, Dave, Glen, Brett (and all of the other helpers at footy that compliment, offer advice or encouragement and give him a pat on the back).

Kali, Darren (and all the parents at basketball that offer help and encouragement).

Tom's Primary School.
I would name them, but I am not allowed.
There are certain people that are amazing and look out for Tom and encourage a conversation when I suggest things are not going well at home.
Tom knows he can go to them and he feels safe emotionally at school.

Every time I witness any of the above, my heart grows with gratitude.

Sometimes it really does take a village to raise a child.

xxx