Monday, 23 February 2015

All Innocence Gone


It has been a long time between posts and I am quietly succumbing to the defeat that is computers.

You see, I have had a blog accumulating for quite some time now.
A blog of our Christmas, Summer holidays, special visitors and information about a new family member.
It was a long one that would have required the audience to pre-plan a cuppa and food.

I am trying not to cry over the fact that stupid blog did not SAVE after a recent VERY long session spent on the computer.
I will try again.
I promise.

I also have two heartfelt movies, that have been made, to share.
Due to my disastrous computer ability, I am unable to upload to You Tube to share with you.
One Christmas present to Scott.
One to myself.

I whole heartedly feel I need to skip that blog anyway.
Something so much more important has happened......

Amelia called me into her bedroom the other night.
I was not in a good mood.
My frame of mind was ready for children to go to bed so that I could stare blankly at a wall.

"Are you in a bad mood?" she asked carefully.
"No sweety. I am fine. What's up?" I answered.

"Am I going to die from my A-T?".

I stopped all movement and thoughts.
My heartbeat quickened.

I realised that the next words I spoke were going to be some of the most important ones of her entire life.
My words were going to either make or break her whole being.

In seconds I visualised everyone that loved this beautiful child and how they had coped with the medical description of Ataxia Telangiectasia.

This child was 11 years old.
How would she cope with the honesty of her own mortality?

I knelt down next to her in the darkness and looked at her face.

"A-T does take a lot of children away before they should go". I began.
"Some die when they are really young, while others live well into their 20's. You are considered a very healthy A-T child. No one knows what the future holds Amelia and daddy and I are trying our best to not let it happen".

Amelia began crying.
I climbed into bed with her and just held her.

"I do not want to die" she said with great fear.

"Get out" she said suddenly.
"Get out and leave me alone".

I was not comfortable leaving her like this, so I turned to the monitor next to her bed.
I knew Scott had the responding receiver.
He always has it.

"SCOTT. Get in here NOW" I said firmly.

For the first time ever, I did not know how to explain something to a child.
My child.
A child who is slowly dying.

I ALWAYS knew how to explain something to a child.
It was my degree at University.
I was blank.

Scott came in.

"Hello. What's going on?" he asked casually.
Obviously he had not heard the previous discussion through the monitor.

"Amelia wants to know if she will die from her A-T".

"Oh" he said kneeling down.

He looked at her tears and my plea for help.

All of a sudden, I saw a man with amazing capability and confidence.

"Amelia" he said firmly.
"We do not know what the future holds for you, but I really need you to look at the...NOW.
You are the most amazing, beautiful child, who is happy and enjoying life.
You are surrounded by so many people that love and support you.
You have 2 parents that love you.
You have a happy home, full of animals.
Have you ever noticed that you ask for ice cream.... I give you ice cream?!
So many children have no home or parents that argue all the time.
Your life is wonderful.
Look at the NOW and not what MAY happen in the future.
No one knows what is going to happen in the future.
Please just love and live for NOW".

I lay silent staring at the ceiling.

Amelia and Scott began laughing and talking of many things.

Hours later, as my body felt light and my mind felt numb, I lay in bed to go to sleep.

I turned my head to the amazing man that I had just fallen in love with again.....

"Thank you" I said.