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