Tuesday, 23 August 2011

Positive energy

I have changed my mind about tonights blog.
There is enough potential negativity around me without me complaining about other people.
I would just like to address what needs to happen in the future.

I would like to ask everyone who comes in contact with Amelia to remember something..........

Amelia does not know what we know.

Adults are having trouble processing the details of A-T, how could an 8 year old understand ?

An adult would not handle knowing they are going to get worse and die early, how could a child possibly cope with that kind of knowledge.

Amelia needs happy, positive comments made towards her.
Not sympathetic and emotional ones.
Because then she questions me on "Why?"
"Why are they sad for me ?, Why are they praying for me ?"

Amelia believes A-T makes it hard for her to walk and talk and she gets tired easily.

That is it.

She does not need to know any more.

Some parents who are telling their children have created a distance between their children and Amelia.
They are scared of her.
They do not know how to treat her.
Instead of happily playing and laughing they try to process in their little minds what is going to happen to her.
They keep their distance and stare.

This is not fair on any of them.

Children should stay innocent and learn to like and love people for WHO they are.
Not what they have or what is going to happen to them.

If children want to know about Amelia's Project then explain we do not have the money to pay for the extra equipment and learning she needs. People are helping us.

I would never try to tell someone how to parent their own child but I do believe the information about Amelia and A-T is for adults only to try and process.
We are expecting too much if we think children can understand what is happening.

Criticism could now arise about the media attention Amelia's Project has recieved.
I never thought parents would be allowing their children to read the articles or having family discussions about Amelia's future though.
But I do think the awareness of A-T is far greater than staying private about it.

Please tell me if you disagree.


(Hopefully this blog does not offend anyone).

Monday, 22 August 2011


Last night as I was putting Amelia to bed, I looked at the red darkness around her eyes.
I looked at the exhaustion in her eyes and the stillness of her body.
I thought of when she was younger and used to get really sick.
I thought of Tom and the difference it makes when he is really ill.
I realised that she constantly looks like a sick child.
She IS constantly a sick child.

The fatigue, the assistance needed and ........ lying on the couch.
Where does everyone like to go when they do not feel 100% ?
The couch to lie down.
Amelia does that a lot.

I then began thinking about how parents feel when their child is sick with a cold, gastro, tonsilitis etc.
It makes your heart sink seeing them so unwell.
Seeing the life zapped out of them.
You just cannot wait to see them bouncing with energy again.

Last night I realised Amelia is always unwell.
And I have been struggling, waiting for her to come back to life.
Without realising it, I am constantly looking after a sick child..............
Or maybe not wanting to sit back and realise it.

I have to let this child go to school, friends houses, grandparents and to bed every night.......and she is not well.

When she laughs hysterically or smiles a genuinely happy smile, it is a massive thing in my day.
Just for a moment I can stop being over protective and enjoy this "minute in time" as one of pure happiness.

You honestly do not know true happiness until you see a child who struggles with everything uncontrollably laugh.

In 44 days we leave for Disneyland.
I know that she will be exhausted and tired for our "holiday of memories".
But I know that there will be a lot of pure happiness.
I also know there will be a lot of happy tears from me.


(This is the first blog that actually made me cry while writing it).