Monday, 15 December 2014



Today we had to have a conversation about death.

As you all know, we have chosen to protect the kids about the full knowledge of Ataxia Telangiectasia at this stage.
You never realise the importance of "saving the innocence of children" until you are in a situation like ours.

This is how it came about.....

Amelia returned from an amazing evening with a staff member from her school.
She has become close to the family and friends of this staff member and sees it as her special place.
But she was tired.
Exceptionally tired.
I lay down with her to cuddle and help her go to sleep.

She started panicking...
"Mum am I going to die?".
"Mum, please make sure I wake up in the morning".
I asked her why she was feeling this way and she could not explain why.
Had she heard something?
Did she feel something?

Amelia has shown on many occasions her ability to teach adults lessons about life.
She has been incredibly intuitive on many occasions to know things that we do not.
Was this one of those times?

"I feel like I am going to die".
"Am I going to die from my A-T?".
"I think about it all the time".
"I think I am going to die tonight".

I began feeling petrified and heartbroken all mixed together.

I told her that I will ensure she wakes up in the morning and we will talk about this more then.
She needed to sleep.

As I left her room, I began to panic myself.
What if it was going to happen tonight?

Scott and I stayed up for a long time.
We talked about how we were going to approach this.
We put her monitor on as loud as it would go.
We listened to her breathing as she slept.

The next day she woke up and said "I do not want to talk about it today".
I said she had no choice and we would be.

I asked her "Do you think you may die soon because of your A-T?".
She quietly nodded her head with tears in her eyes.
I then explained that A-T children do die sometimes just like some children die of an asthma attack or go missing from their front yard.
Lots of children and adults die too early for lots of different reasons.
We all die at some stage.
I explained that her inside health is excellent and that is how A-T children generally pass away. She does not have the kind of struggle with coughs and colds like other A-T kids.

I then moved the conversation on to where we may go when we die.
I explained that no one has come back to tell us of the place that we go to but I do believe there are people that love us waiting for us there.
I explained that if she were to die, Nana Val (Scott's mum) and Barney (our very loved labrador) are already there waiting.
She will be able to run, play, dance and sing.
Her A-T would be gone.
The place will have beautiful green grass, fairies and butterflies flying around and a gorgeous sunshine.
It will be magical and you will feel free.

The conversation approached missing those "left behind" ......................  us.
I explained that this magical place does not let you feel sadness.
You only feel happiness.
You will be there waiting for us.
We will be so happy to have YOU show us around when we die.

Dying is not a bad thing.

Scott said I did good.

I hope that one when the time does actually come to say goodbye, I have begun the process of easing some of the fear of dying.
Too sad that you have to have this conversation with an 11 year old.


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