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