Harsh but true.

I have been battling my own, personal demons recently.
It will probably not come as a surprise to any of you, reading my posts on Facebook.

Adjusting and settling in to full time work is HARD.
It is especially hard when you have a family at home that needs you, and it is obvious, they need you there.

But this week something happened to remind me of the importance of day to day.
The importance of being alive and having loved ones close.

A beautiful friend of mine was diagnosed with bowel cancer.
Fine one day, diagnosis the next.
The result of a basic investigation is just a reminder how everything can change so quickly.
She has four stunning daughters.
The youngest has Downs Syndrome and is classified as "high needs".

As they wait to see the surgeon, as they wait to see how bad it is, as they wait to hear if it has spread..... must be horrendous.

When I publicly announced their situation, the community (world wide) support has been phenomenal. Groceries were ordered, Christmas lunch supplied and messages galore were circulating about paypal accounts, cleaners and babysitters.
Very comforting to know that people want to help and assist in some way.....any way.

The road ahead is going to be tough for this family, but the thought of so many standing by them is humbling.

Last week marked 3 years since Amelia was diagnosed.
Three years since our whole world stopped turning and we began the journey of our new "life".

Looking back to the life we once had is like reading a fairytale.
Now it is so very different to the life we used to lead.
The life we took for granted.

Now it is like we are looking at every situation under a microscope.
Everything is enhanced.
The small is so much bigger and the big can be overwhelming.
You cannot possibly describe this feeling to anyone.

It is common knowledge that we have lost many friends.
Some through conflict and others because it is just too hard for them to watch.
Some just drift away, never to be seen again.

I will never be able to explain what it feels like to be smothered with attention and assistance..........
and then it ALL stops.
All of it.
I actually have nightmares about it.
The kids ask where certain people have gone.
I cannot answer them.

Three years down the track could be considered a lonely existence.
But we try not to let it be.

We have happiness, we have sarcasm, we have love.
Scott, Amelia, Tom and I will always be here as a tight unit.
Others will come and go........including family.

Today another A-T mum began posting her fear.
As her child was admitted to a children's hospital in America........as the child (a similar age to Amelia) was moved to the oncology ward........... as she waits for what lies ahead......
We all cry with her.

A-T children are 1000 times more likely to get cancer than any other child.
It is disgustingly common.

Until you FEEL that fear.
Until you feel what it is like.......
You have no idea.

To know......
to feel the fear of death in the near future.
Until you cross to the other side..
You live that fairytale existence..
And I am so jealous of you.

Our financial difficulties are nothing in comparison.

xxx

The day of the PENIS

For the last few months Amelia has been very demanding for me to spend time with her on the weekends.
The impossibility of putting food in my mouth and have a two way conversation, of a weekday evening, has become obvious to her, but weekends are full on.
Every Saturday morning I wake to "Amelia's Agenda".
There is a small part in her brain where she stores ALL of the ideas she has for US to do over the 2 days.
I am ashamed to admit that I have had to stay home on two Mondays due to being burnt out!

This weekend, she was constantly mentioning the "sculpture park" up the road.
It is a wide open area with walking paths (Amelia calls it hiking) and looking at weird contraptions along the way. The distance is very far and conversations circle around "what was the artist thinking?!". They have a cafe if you have money and a lake full of hungry ducks.

After being asked the tenth time for today "when are we going?" I contacted the neighbour's across the road. Scott and Tom wanted to watch car racing on the TV, so I rang the people that live opposite on behalf of Amelia. After some describing of my role as Amelia's secretary and that their company was being requested, it was decided that they would join us.

Due to my excessive weight gain recently, I found it tough, but the company made it easier to discuss "what makes people think about, creating this stuff". It up and downhill and I swear the maze sculpture alone was about 2km long!

Towards the end we came to a sculpture of a man interacting with what I can only assume was his pet pig. The man looked like something out of "The Hobbit", but that is not the point of my story.
As we approached, it became obvious that the man had no clothes on.
"Oh look. You can see his penis" I said loud enough for the whole suburb to hear.
Amelia directed her slow tracking eyes over to this part I had bluntly described.
She squealed and then started laughing.
"Look it's he's penis" I said again (just in case people 1km away did not hear).
Amelia starts bouncing around in her chair, trying to release the laughter that has overcome her.
Our neighbour's children were also fully involved in the hysteria (I do not think the neighbour was very impressed at this stage).
"Lets see if we can see his bottom" I say wheeling Amelia's chair around to the back of the sculpture.
(Children and I are laughing hysterically at this point and running around to the back. Neighbour does not know which way to look).
Yep the bum is fully visible.
Amelia is unable to stop squealing and laughing and I suddenly have a light bulb moment..... PHOTO!
So I reverse Amelia's chair directly in front of penis.....sorry sculpture.
Four very formally, well to do people (obviously just attended the expensive cafe) walk towards sculpture and look at me positioning Amelia.
"Sorry" I say loudly.
"I am just taking a photo of her with the penis".
(Amelia is almost crying from laughter).
I decided to also let them know about how I felt about how the sculpter could have been more creative with the end product.
Very loudly I say.......
"I think there should be an interactive button on this one. Push it and he pees".

Neighbour finally talks and says "oh my god. I do not know you now".

People leave quickly.

Take photo.

After having some biscuits and feeding the ducks.....I see another.
ANOTHER PENIS!
Knowing neighbours concern of what I am introducing to her very young daughters, I say....
"Stay here. I have to go over there with Amelia".

Hysterical laughing at second naked man in middle of lake.

We go home and Amelia blurts out immediately to Scott and Tom....
"WE SAW A PENIS. TWO OF THEM !!!!".

Please feel free to share.....just in case anyone wants to see a penis or two.

 Penis 1

 Just in case you missed it.

 Amelia in front of a lake
Oh hang on........ there is a penis behind her.

This will probably mean the book is R rated now!

xxx