RAW

I am pissed.

I am really fucking pissed off.

(Forward note before you continue reading...... I am fine.
This is all Internal and not being expressed to adored children and husband).


How the hell did Scott and I deserve this life??

We are no longer a loving couple.
We are partners in medical care and exhaustion only.

Amelia has gone so downhill since the operation in so many ways.
We have to do EVERYTHING for her now and it is shit.

In what possible way did we deserve to receive this much pain and pure utter exhaustion in life?

How is it fair that you now have to ask your child to repeat herself at least 3 TIMES so you can try with all your might to understand her?

The A-T would have been enough...
But NO.
Lets throw in cancer as well.........
and Type 1 Diabetes.

Lets give a couple so much worry and heartache and see if we can break them.

I am OVER IT.
Like seriously over it.

The threat of their being more cancer in the future......
More hospital stays....
Longer hospital stays....

Has seriously pissed me off.

What did we do and at what stage to create this future?
This life?

Amelia and I live in each others pocket, so to speak.
Because she has such high anxiety now, she will not leave us for respite.

Scott and I have NO time together.
When the beautiful Kate offers it.....
We SLEEP.

Like seriously?!

The amount of areas in our lives that have changed (meaning Scott and I) because of both Amelia's and Tom's diagnosis's is HUGE.
Some of it is good and some of it is bad.

And then there is Tom's life.
I cannot even possibly list all the ways his life has been affected.
I SO SO SO hope he continues to be the amazing kid that he is already....
But still?!?!
What kid has to help feed his sister and clean her from age 5?!

And Amelia?????
The worst list.
The absolute worst possible fucking list.

I cannot even begin to name what she has said to me and what I have seen her endure.

She is intellectually unaffected by all this.
How would you like strangers wiping your bum?

Who would grant such a miserable, horrible life to such a beautiful, caring child?


I am over it.

I want a 13 year old daughter that goes to the local High School and is having trouble socially.

I don't want a child that is 13 and has to have someone wipe her on the toilet.

I don't want her screaming at me that she wants "a normal life" anymore.

I do not want a child that I know is going to die anytime.... anymore.

It is almost 6 years since the initial diagnosis.
The fact that it was not the end of "horrific news" is ........
well indescribable.

This week I received a phone call from one of the friends lost in the last few years.
It was nasty and she was in "attack mode".
I was proud of myself for choosing to just hang up, rather than attack her back.

No one.
Absolutely NO ONE knows how we live and what we go through.

This is when Scott and I first met.
1990.

How is it fair that we now cannot have a loving relationship?

Why is it fair that we live day to day for our children's health issues?

At what stage did we deserve to be dealt this much pain?

I will continue with this life.

But I will always question why.

After her funeral, I will look back on this post and want this day again.

To have Amelia is everything.

I must remember that.

xxx