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

Gastroparesis - digestive system shutdown

Hello dear friends,

After not having to attend hospital at all from 2011 - 2016, we have had to attend numerous times since June of last year with Amelia.

We seemed to have been dealing with the Ataxia Telangiectasia only, for a long time, and now many "side effects" of this disease are now appearing.

A degenerative disease means it only gets worse over time.

On my own personal journey, it appeared that I grieved for the child that I thought I had while accepting the one I do have, for a very long time.

Now we seem to be experiencing many of the complications that can occur with Ataxia Telangiectasia.

Recently her digestive system decided to stop working.

Amelia's stomach and bowel were full and were not moving along as normal.
She vomited regularly because there was nowhere for the food to go.
She did not want to eat, because she felt full as the stomach and bowel were not emptying.

I am grateful that the doctors are trialling medications to get it started again.

The general progression for an A-T child is to move to peg feeding (a tube of fluid/formula straight into the stomach).
It is a natural progression in this disease and is harmless.

BUT as has occurred with so many other children.....
She has had walking taken away.
Talking.
Feeding herself.
Toileting herself.
Showering herself.
Using a computer.
etc

I will try SO HARD to save the enjoyment and love of eating orally.

I cannot possibly describe the most favorite things in her life on 2 hands anymore.

Food is one of the five.

I know this is the progression of the disease and one step further to... lets not discuss it anymore.

But I just can't comprehend another step at this stage.

Saying that....
With Amelia doing a few hours back at school this week for the first time in many, many weeks, it has allowed me to analyse and process a plan to move forward.

We need to accept and understand that we will have regular hospital visits in the future.
We need to understand that the disease is progressing faster and at a different pace to others.

I need to understand and accept this.

I was prepared this time for hospital, and it made it all much easier for everyone.

It still does not make this whole horrible journey any easier, but at least everyone knows that the digestive system shutting down, is just another stage.

I would sacrifice myself to stop these stages from happening, but A-T does what it wants.

My personal journey recently has taught me that I do stupid things and offend regularly.
I am also learning to be weary of those that gossip and judge.

I do not have enough tears for those situations, let alone my own.

Please don't be offended if I do not make regular contact, I am going to be a turtle under its shell, or exhausted!

Just wanted to explain the recent crap.
xxx

Getting Back

Hello Friends,

I am happy.

I know this is a major shock after the previous blog.

It is difficult though being an advocate for a child that you could lose at any moment.

Medical professionals were not listening to my concerns and the concern of waiting for possible new cancer results did their toll on me.
The fact that a common cold can take her away has me always on high alert.

Amelia and I have not been separated for 7+ weeks.
I have caught her projectile vomit, cleaned it off her and the couch and in her very long hair everyday for 7+ weeks.
I have watched her eat only 2 mouthfuls of food every meal time or sipping on apple juice to keep her Type 1 Diabetes within a safe range.

I was beyond angry at the medical profession, for not helping me get her better again.
All my emails and phone calls were not returned.
Unfortunately the kids heard me call them names after one phone call.
They proceeded to tell Scott what    F*#@ D%$#@!    RCH were.
Oops.

Last week we arrived at emergency after 6 vomits in one day, and I finally felt like we were heard.
The doctors that we know so well, looked at Amelia lifeless on the bed, and me 100% exhausted on the seat next to her and finally told me they were going to help us.

We actually had the best stay in hospital yet.

I have also been more assertive and direct towards anyone in my entire lifetime.

"We are not leaving until you find an answer".
"What about this link and this suggestion".
"NO. You are not doing that to her".

Challenge (cancer organisation) and the nurses were all incredibly kind and nurturing.

Amelia was beyond AMAZING with testing that was humiliating and painful.

Scott and Tom and my dad went straight into "the routine".

We have left with a possible diagnosis of Gastroparesis.

I am yet to determine if it was caused by A-T degeneration, T1 diabetes diagnosis or flu and pneumoccal vaccines.

I am not anti vax AT ALL (children not getting these diseases keeps Amelia alive), but T1 and the vaccines occurred 1 week before the vomiting began.

But we have come home happy with a new regime that may be working.

Scott and Tom are happy.
We are possibly getting used to these separations.

Tonight I was nominated to take Tom to his Football awards night (Scott had already done the basketball and football game).

I normally stand in the corner alone in previous years, because I struggle to socialise and talk about anything other than Amelia's and Tom's health issues.

Tonight I did well.
I talked and listened.
I enjoyed being out.
I ventured over to people rather than wait for them to come to me.

It was 1 hour, but 1 hour where I pushed myself to try.

I was so proud to hear about Tom as a footy player but so much MORE proud to hear of him as a nice person on the field.
Helping players up that have fallen, patting team mates on the back and offering praise and where to stand.
(not so much kicking a player that had kicked his friend!).

They spoke like they knew him almost like I do.

These kids and players have been with him for years but I have never let the adults beyond my "guard".
Maybe next year I will attend the parent events more.

I need to get out and socialise more.

Someone very wise recently said "You are losing Amanda".

I realise I am. That is why I have become so weird lately.

I now realise how lost and absorbed I am in each child's health.

I actually do not have a life or an identity anymore.


I have to finish with something about our sweet Amelia though......
In the recent Pandora catalogue she found a charm (amongst 300+) that is a love heart.
Tonight she asked me if we can go and buy it.


It says "YOU ARE SO LOVED".


Thank you for making her feel that way.
xxx

Hello Friends,

Scott has had to communicate the latest medical news on Amelia because I am not doing too well.
(on Amelia's project on Facebook).

I am tired, emotional and have extended many of my limits.

The last 6 weeks, the last 12 months, the last 6.5 years has taken me beyond anything I ever thought I was capable of.
I still doubt myself.

Keeping Amelia upbeat and comfortable without panicking is hard.

How any one person (and I know lots do!) can handle this kind of life, I take everything off to and congratulate you (and everyone knows I am a prude).

Amelia, Tom and Scott are my everything.

I really have no other life besides them.

BUT the battle to keep Amelia safe and alive is everything right now.
All of them has always been my everything.

I have so many things that I am questioning to the doctors regularly.......

The arguments, complaints, online studies and questions of investigations....
(recorded and documented)

Some have acknowledged that they have not thought of that.......
Or jumped to "I am so sorry. I will look into that".....

So many things that have been on the list since the beginning, 6 weeks ago.
Insulin for Type 1 was my first contact.

If it ends up being that for the nausea and vomiting, I may have to kill them.
I say that quite seriously.
The amount of trauma and stress Amelia has experienced, after they were the first dept asked.....

I am so mentally and physically exhausted that I feel like I am going insane.

Now we know that our beautiful Amelia has to endure another aneasthetic.
One where I have to once again hold her hand while she sobs and pleads for me to have it not happen again.......
ME. Only me.

No one experiences that with me.

NO ONE knows the pain and suffering on her PTSD and my heart when she BEGS for it to not happen again.

Especially when it brings no result.

No one knows the pain....

And yet, I and most importantly Amelia, will need to go through it again for the liver biopsy.

What if it is cancer?

It is just not fair.

Our life is fucked and I wish that I and more importantly Amelia had NEVER experienced this pain.
God does not exist if he delivers this kind of pain and suffering.

I probably will not update for a while.
Sick of reporting sad stuff.

I am over it.

xxx

Dear Friends,

My recent posts have been extremely emotional and negative.

It is difficult when the mother is writing.

It is hard not to focus on my own personal emotions, especially when Amelia rarely leaves my side and Tom is never far from me or my thoughts,

Tonight I will write about my amazing children......

Amelia has a smile that always lights up an entire room.

When she laughs, like REALLY, really laughs, it is so contagious that the whole room loses it.
It is one of those laughs where she struggles to breath and no sound comes out.

It is the happiest thing that you could ever, ever see.

I do not recall EVER seeing someone in such a happy state of mind.

If you have been fortunate enough to see it, you will understand what I am talking about.

Amelia can sometimes have the quickest wit in her "one line comments" that it can do the similar....
except the whole room is encased in uncontrollable laughter.
It can be so unpredictable and people have no warning, it can literally blindside you.

I have said many times....
People look at me and say "Did she just say what I think she said?!"

Amelia's empathy is the biggest thing taught.

People and animals.

She reminds you of feelings and lives.

Her sympathy, empathy and compassion is overwhelming.
With everything she travels through, she is always thinking and asking about others.

But in everyday life, with all of this known, we try to stay upbeat and busy.
Shopping, visiting and conversations.

Conversations can be indepth, but we have now moved on from honesty to optimism.

But she is too clever.
She always corrects us and points out the obvious.

Tom is an interesting and technical character.

After living with this for so long, we try to keep up with his current state of mind, but it is difficult.

Tom overwhelmingly adores his sister, worries about his father and I emotionally.
("Do you need a hug mum?" is a daily occurance)

He is a perfectionist with school work and stress of high grades (TOTALLY NOT brought on by us).

Tom is 11.
He wants to be a kid.
He wants to play sport, play with his friends, get out of the house and interact with people.
He knows that he adores Amelia and wants to be part of everything in our family.

Yesterday as Amelia began projectile vomiting with our latest concern, he went out the back and played basketball.
It was the first time it was really apparent that he was ignoring the current situation.

So many times recently, he grabbed the bucket when Scott and I were not nearby.
I walked in to him rubbing her head and consoling her.

Yesterday he showed it is becoming too much.

Yesterday I told Scott we should have had another child for Tom when we had the chance.
I am really regretting not giving Tom a lifelong sibling at this stage.
He will need someone in the future years.

BUT, BUT, BUT,

This post is not about me and my stupid negative thoughts.

This post is about the fact that I gave grown in my belly and given birth to 2 amazing kids that have provided so many with so much thinking on "LIFE".

Recently we meant people that said "We have been reading your blog".

"She is NOT crazy" Scott said pointing at me.

He was only responding to what people may and do think.

I do not have the strength in this battle I have been dealt, but I will find it and will deal it appropriately.

He was speaking about my writings and my inner most thoughts.

Amelia and Tom are amazing on their own.

They will always show their own selves and proves the amazing people they are.

xxx