Hello Dear Friends,

It is entering the end of 2017 and so many of you have travelled such an emotional journey with us since the beginning...2011.

So many have travelled your own with us.

Emotional to us means...

SAD-
Cerebral Palsy (2006)
Amelia's diagnosis of Ataxia Telangiectasia (2010) and
Ovarian Cancer(2016).

Three of the biggest scares.

(Regularly mentioned "go home and cherish her. We don't know how long she has").

Amelia finding out she is Terminal and the amazing Scott coming in and doing the most magnificent explanation of research and health and "we don't know".......

(If I seriously did not have him........).

Amelia slowly lost the ability to walk during grade 1..........

(many of you saw her at school, walking and playing - being pushed over because it was funny to watch her fall by nasty kids).........

dancing, climbing and running before the walker.

Amelia in AFO's,
then a walking frame and
then a wheelchair as her legs froze as the disease of Ataxia telangiectasia took over.

My torment as a mother feeling like we are in palliative care indefinitely began.......

We still are.

BUT I will have that over anything else.

ABSOFRICKENLUTELY.

To have this precious child here beats any stress, depression, torment and pain.

Even now I feel like I have a toddler constantly needing help.

When will she be taken?

No one knows and can help me with an answer.

But I also DO NOT want an answer.

I only want to know what to avoid.

KEEP HER HEALTHY is all they say.

KEEP HER WALKING so her legs do not go numb......

I now need a new left hip and back fusion in the lower disks.

But it is worth it.
SO incredibly worth it.

KEEP HER WALKING.

Her legs can still walk and are walking tandemly with mine.

Tom dealing with the mental pain and of watching Amelia and knowing the truth so young....

and working through it better than anyone else........

ANYONE ELSE.

Blowing people away with his love for his sister.

He is amazing and is going to be THE most amazing adult.
Is helping us ALL get through.

He is A PAIN IN THE NECK in a million other ways....

BUT the way he is with Amelia, would melt anyone's heart.

To find him feeding Amelia (while I answered a phonecall) when he was 6 would melt the hardest of hearts.
Without me having time to ask.
It now happens regularly.

Tom has continued on this same pathway.

He is supposedly part of the "cool" kids and yet is well known to still stick up for those that are "quirky", "coloured skin" and "different" by yelling "STOP".

(I have collected many, many messages from parents over the years about this).

The kids supposedly know and listen and do STOP.

Proud is not strong enough a word right now.

And Scott leaving the corporate world because of the overall pain and time off needed etc
It is shit and also amazing.

Life is looked upon differently now.


HAPPY-

(Amelia's regular drinking (plain water) has just been take off her).

Next it will be eating.

Her swallowing process is shutting down.

It is the process for her disease.

Horrendous in "quality of life"

(She is a mess about it.).

Amelia's sarcasm and humour and most recently FOUL mood helps greatly.

This one is incredibly hard to describe unless you witness it.
It comes so incredibly out of the blue, we all fall over!

IF you have stuff taken off you (that is normal-eating-etc) you crack it.

You know what is happening.
You absolutely crack it.
- UNDERSTAND.

Disabled people regularly have a "label".

A-T more so.

One where they cannot talk, understand, do what they want or communicate

Amelia's school teaches something SO different.
They teach these kids how to do all of the above.

The commercial on TV we all waited so patiently for a few years ago came.

Melbourne zoo with Howie and Kate Howard.

Disneyland.

Anyone who has ever entered our house.

We have LOVE.
We have PROTECTION.

We hear it regularly - the difference to so many other families and also similar.

(we also have depression, meltdowns and anxiety!).

We have REALITY.

Soooooooo much more to write in the coming days.

Love to you all.

xxx


we will get through this.

Honesty in the coming days xxx