Tuesday, 3 May 2011

WARNING: The following content may be depressing.

Very flat this week.
Not feeling positive and happy at all.
Trying, just not succeeding.
I understand that I need to and have to have times like this, but it does not make them any easier.

A family in America that I am becoming fond of just found out their A-T child has lost a large amount of her cerebellum (base of the brain). This little girl is 7 years old. Reading the posts and then the blog took me back to how I felt in December when I was being told horrible things about Amelia.
Then someone very kindly donated a shower chair to us. But the chair made me very upset. It is an example of our future. Of Amelia's future. I have had to actually put it away because I cannot look at it......right now.
Then today I was told about a 7 year old in Ohio that had a seizure (common for A-T kids) and is now in a coma.
Amelia is seven.

But this week Amelia is struggling.
Tonight she was crying, extremely tired and talking gibberish (in that I could not understand her).
This week I have watched her sitting and watching other children play, unable to get up and join in.
When other children talk to her she has difficulty turning to look at them and then speak, to answer.
Hearing about things other children are enjoying and doing.
Any discussions about school centre around how "hard" it is.
I never, ever thought I would think about this situation so early on but maybe I need to start preparing us all for Special School.
Maybe it would not be as "hard" and she would not be the only one struggling.

Just crap really.

So I will continue filling my face with red tulip easter eggs and then spend a cuddly day at home tomorrow with my special little girl.


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