VERY full on. Don't read if you don't have the emotional energy.

Hello,

I am exhausted.
Beyond exhausted actually.

I currently have a husband and a son in the room behind me trying to work out "how to help me".
I can hear them.

You see, I am sitting here crying my eyes out.
In our study at the computer.

I am over it.
I am over the constant battle to live each day positively, to only get knocked down consistently.

2006 Cerebral Palsy - life will be a battle for her.

2010 Ataxia Telangiectasia - to be told by a room full of doctors "Go home and cherish her. There is no treatment and no cure".

2016 Ovarian Cancer -It is HUGE. Oh lucky we got it all out. Oh dear, it will most possibly return in the lungs and we don't know how we can treat it then. We will do tests every 3 months that will make her scream in pain.

We are all now waiting for abnormal Liver function test results that are SERIOUSLY abnormal.

Today is the 4th day of waiting for someone to communicate something to us.
ANYTHING to us.

I DO NOT SLEEP.
I have not slept since February of this year since "symptoms" began of what we thought to be a UTI. She needs the toilet regularly.

Scott has nightmares all night that I need to wake him up from at the moment.

I lay there thinking.

Tom's anxiety levels seem to be increasing.

Amelia repeatedly says "I hate my life. I can't do this, I can't do that. I hate being like this".

And do not dare mention any concern or console me in front of her, because she has a panic attack that another thing is happening to her for about 24 hours.

Of course she does!
It is her body all of this happens to.

Someone in a support group for A-T recently wrote "Stop all of the drama posts everyone. Live positively".
She suggests letting your child live like any able bodied child and being happy.

I am trying.
I am trying so fucking hard.

But what if a MASSIVE baseball bat keeps coming and doing a full pelt hit at you regularly, when you least expect it?

I have and am losing friends left right and centre....

As we are financially digging the biggest hole....

An hour ago, I just said to Scott, "With all we see and hear about A-T children dying suddenly...I just know I will not cope. She is my everything. How would I continue? I know that I will have to because of Tom, but I don't how someone does that?".

He's reply "I will be there for Tom. I always fall apart ages after you".

WHY does anyone have to go through this?

WHY does anyone have to experience judgement and expectation from others at the same time?

At this very moment, as I struggle through those tears you struggle to see through, WHY do any of us have to travel through this?

I understand that no one knows what I speak of, because they do not live it AND think it 24/7.

But this is how I feel right now.

I am just fucking over it and cannot stop crying.

Good night.

xxx

Love you all too