Changing Lives Part 2

Hello Gorgeous People,

Recently I received a letter in the mail from a therapist that worked with Amelia from before her Ataxia Telangiectasia diagnosis (2010)  till about 3 years after.

She put in applications for equipment and home modifications in such a subtle, gentle way that the future of Amelia's diagnosis was still able to not be fully absorbed by me.

All I was able to remember from the day of diagnosis was "go home and cherish her".

I was not thinking of the inbetween.

The decline.

The ramps that would be needed when she became wheelchair bound.
The shower chair when she could no longer stand in the shower.
The kitchen table chair to stop her from choking when she could no longer swallow properly.

She was still walking, talking, dancing and ALIVE.


The room full of doctors just told me she was going to die soon.



This person set up our house so that we had everything we needed for what was to come.

She became a friend and a supporter through the transition of "normal" child to "exceptional" child.


This letter said many things, but ended with........

* congratulations on the many successes that you are achieving - individually, as a family and for the wider community.

* thank you for helping me to "keep real". To stay motivated for the therapy students I now teach and ultimately for the people they will work with.


As a person older and wiser than me, I always admired this person and have taken great comfort and am immensely flattered in her words.

_______________________________________________________


After my most recent blog, a friend said to me "I do not know that kind of world".

BUT everything with everyone is relative.

Pain and sadness is equal, despite the massive differences in circumstance.

If you have never felt the kind of pain, sadness, stress and hurt you are experiencing, then it is relative to people that live a life like mine.

Witnessing your child go through their first heartbreak is relative.

Because the tears and the struggle to breathe are equal.


"I am so sorry. What I am experiencing is nothing compared to you" is said to me on a daily basis.

But it does compare, because it is relative to your life.

_________________________________________________________

Tonight I received a message that I have been given permission to share......


I just logged into Facebook and read your post from 3/12/19 in regards to dear Toby and Amelia.

I am facing some of the most challenging issues in my little world at the moment and I am so emotionally fucked and mentally drained, to the extent of finding myself sitting at the top of Olivers Hill with a box of pills recently.

Then I read one of the most powerful, raw and heartbreaking blogs.

I am now in tears as I am reminded of how fucked up this world is and so overwhelmed by the impact that your strength and Amelia's attitude has had on me.

For what it is worth, thank you for sharing your personal journey and please know that you have helped me in a way that I cannot explain.

I feel so selfish and my pain is a drop in the ocean compared to yours and Toby's mum.

But I need you to know that I am always here for you and I am so proud of Amelia's strength and resilience.
You and Scott are an amazing team and should be so very proud of yourselves.

Amelia is a kind, caring, thoughtful, intelligent and beautiful, inside and out, young woman because of her mum and dad.

You truly have had a huge impact on me.


_________________________________________________________

Many, many people read the last blog and it was shared multiple times, to hopefully reach people like this and in a horrible moment like this.

Hopefully people are remembering in bad situations to dig to the very pit of their stomach and to the very far most point of their brain to find a positive.

_________________________________________________________

Amelia is one of many that has been placed in this Universe for a reason.

To change peoples lives for the better.

My purpose in life has become the one to communicate what Amelia teaches me and what I learn from living this life through my own eyes to all of you.


_________________________________________________________


Today,  another 10 year old boy passed away from Amelia's school.

Cardiac Arrest.

R.I.P Shiraz

xxx