Feb 2017

Hello friends,

So much pain and suffering happening at the moment with some of you and so much celebration and elation amongst others.

From one of my previous blogs, Scott (my husband and the kids father) found THE most amazing job.

He is working in the disability sector and could not be more perfect for it.
Scott is now coming home from work bouncing with excitement and talking with such "passion", it has blindsided the kids and I.
He has never been like this about a workplace.
It is amazing to see.

Personally, I have struggled since just after he began and I am accepting that it is ok.
It has taken a while of "beating myself up", but I think I now understand the reason.
(explained further on).

Scott had to leave work because of the nasty new management and the "after affect" of Amelia's cancer diagnosis.
He could not be the nasty person firing people and following the new heartless rules.

My blog thankfully introduced him to a new job opportunity to someone that knew his "situation" and embraced it.
Scott could be a possible asset.

I will be forever grateful to this person for contacting me.

The change in Scott is immense and everyone comments on it now.

Since Scott started working and the kids started school, I have fallen "in a heap".
Pathetic........ I KNOW!

I think the pressure of unemployment, me not being to work due to both kids illness/s and the stress of "what the fuck are we going to do" has caught up to me.

The financial stress is a killer.

Scott started work and came home with amazing stories and passion.
The kids started school and after some "teething" problems from their diagnosis/s they are now doing well.

I fell apart after they all left during the day.
I was SO angry about this.
WHY?
Scott is working!
The kids are back at school!

Why the fucking hell am I not coping?!
Why can't I leave the house?
Why is my mind and heart racing?
Why do I just want to stay on the couch ????!!!

I have come to the conclusion that I have held it together since Scott became unemployed.

Since Amelia's cancer diagnosis.
Since her subsequent Post Traumatic Stress Syndrome.
Since my own subsequent Post Traumatic Stress Syndrome (since I thought Amelia had died during the operation for 15 WHOLE minutes).

Since Meredith's sheer hell of her 6 year old passing.
Through Gary Watson's sheer hell of Julia passing.

The pain may still be there, but the immense pain was over for me for a while.

My family all left.
My family all had school and employment.
Scott FINALLY had a job.
The kids were FINALLY back at school.

(please do not judge the 24 hours a day/ 7 day a week job of parenting a special needs child. It is constant. We have two. But we have 1 that gets upset at respite and needs everything done for her. EVERYTHING. I struggled with these school holidays because it was so exhausting).

In the last 12 days, I think I have let myself experience the suffering of not "having to" hold it together.

It all caught up with me and I could not physically move or leave the house.... for days.
It is still partially happening.
The kids are back at school.
Scott has the perfect job.

Amelia is happy and Tom is happy and Scott is happy.

I will now work on making me happy after partially "holding it together" for months.

xxx

Hello dear friends.

Tonight I have bombarded people on Amelia's Project Facebook page with photo's of Amelia and her gorgeous friend Jackson on Valentine's Day.

I have been laying in bed wondering WHY this is so important.

Why tonight has meant so much to me    .....   and for her.

Jackson and Amelia have celebrated (and been teased) about this day for almost 5 years.

They buy each other gifts,   of their own asking  , and ask to spend the afternoon together.

WHY is it so special?

Is it the memories that we as parents can have in the future?
Maybe.

Is it the "silent" connection they have with each other that many wish for?
Maybe.

Is it the acceptance and understanding of each other in their different disabilities and difficulties?
Maybe.

Is it the future of marriage and children that they will NEVER have?

Probably.


I look at my posts and blogs about Tom and his unique personality....
His clever maths skills and his incredibly compassionate nature with Amelia.
His competitive nature and my worry about a suitable High School.

Why?

Because he has a future.

He has a future to become something amazing.

He is probably like so many other children, but he is the one I can look into the future for.

Someone who is not "terminal".

A person to make a real difference in the world and for his future wife/husband and family.

He has a pathway available to him.
A pathway that is ready and able to take him on it, if he chooses to walk it.

But a school may help him WALK it.
I need to find him THAT school.

(Absolutely NO mention is EVER made to Tom about this, before you question!).

Then there is the posts I write about Scott and I.

Yes.
We met when we were 15.

Yes.
We are both 42 now.

Yes.
We have a 13 year old child who is terminal and at a Special School.

Yes.
We have a 10 year old Type 1 Diabetic.

Yes.
We have not separated and divorced.

Yes.
We have grown closer with the stress and worry.

Yes.
We are a house full of love and talking.

Yes.
We are a house full of stress and anxiety

Yes.
We are a house full of LOVE and SUPPORT.


This house is not full of ignoring, sibling rivalry or work stress.

We have lovingly created a house of love and emotional support through lack of money.

BUT we also have the niggly disagreements!
ANYONE would with financial stress!

We have learnt that friendships come and go.

BUT love and commitment stays.

A TRUE connection stays.


YES!

Amelia and Jackson have shown me sooooo much in the last 5 years.

Acceptance
Love
Understanding
Friendship

And living and loving life, no matter what the circumstances.

(Photo taken 2 years ago).

This is why I cannot sleep.

These 2 people are helping to shape my thoughts and my future.

The WHOLE school that they attend does.

THE most amazing children.

But I had 2 of them (one being my own!) in our house tonight.

One other, Tom, is being formed and shaped based on what he regularly sees and helps with here.

Scott and I are merely the moulders, like an artist in clay.

We mould and learn while Tom is shaped into his adult form.

Amelia is constantly requiring "adjusting" and "reminding" with the loss of her brain.

Tom needs to take over at some stage.

We need to be the guiders, rather than the shapers at sometime.

Amelia will be a constant.

Thank you Amelia and Jackson (and soooooo many others).

You are teaching so many.

Maybe it is not about the FUTURE, but about the lessons of NOW.

Maybe you are teaching many about each and every minute of NOW.

Appreciating the NOW.

We are ashamed of who we used to be compared to now.

Your compassion, understanding and acceptance is an example of who should "take over the world".

Thankyou.

Thankyou for coming into my life and our lives.

You have changed me and us for the better.

xxx