I have just realised a part of myself that I do not like.
Hopefully it is new trait and one that I can eradicate immediately.
As many of you know my cousin and I have been making a DVD using video footage of Amelia.
It features Amelia when she was 3, 4 and 5 years of age.
It ends with video footage of Amelia now.
I wanted it shown on Saturday night at "The Amelia Night".
Then I wanted it put on You Tube.
It has been very upseting collating all the footage.
Everything she COULD do when she was younger and everything she CANNOT do now.
But I became very driven and focused on completing it.
I wanted the world to see what this horrible disease is doing to my daughter.
I wanted everyone in that room to know exactly why they are there.
I wanted to prove that Ataxia Telangiectasia is evil.
Tonight I was gently asked (very cleverly I might add) to think outside the square.
To just be aware of the repercussions this may bring.
By creating awareness of Amelia and her rare disease, I may also be opening up Amelia's life to a million negatives.
She obviously does not like the idea.
Amelia does not want to ever see footage of what she used to be like again.
She does not feel comfortable with me filming all of the things she cannot do now.
And I thought my motive was more important.
Amelia's friends are now getting to an age where they search the Internet.
Their parents may watch the video we create on FB or You Tube and not notice their child watching behind them.
I did not even contemplate the effect it would have on them and the possibility of what they may say to Amelia.
My motive was more important than thinking outside of the square .........
And finally "The Amelia Night" is positive, happy and focuses on enjoying the life we have, no matter it's timespan.
Every time I wondered whether it would create a depressing night........ I thought my motive is more important.
So after many, many hours of collecting footage, we have decided to lay the idea to rest.
And I will focus on my narrow minded behaviour and have a good honest chat with my daughter tomorrow about all the wonderful things she CAN still do (and that mummy's make mistakes too).