Saturday, 14 December 2013

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 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.


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