Wednesday, 9 November 2011

A-T is shit.

Just having a very DOWN moment right now.
(Before you worry, it will pass.It always does.)

We have just been through two very difficult days with both children.

It began yesterday when Tom asked me....
"Mum. When I go to school, I will have to tell all my new friends about Amelia. I will have to explain that she is not a baby".

Broke my heart.

I looked at my little man and wondered what was going on in that 5 year old little mind of his.

I explained that Amelia has been at the school for a long time and has established herself already there.
HE does not need to worry about her OR about making friends.
He is going to love going to school and everyone will love him.

I did not know what else to say.

Today he was told a story about how someone did "something" six times today and the same "thing" six times yesterday.
He looked at me immediately and said "so they did it twelve times then".
He is difficult to monitor sometimes.

Two more situations arose yesterday that I cannot discuss due to other people being involved BUT both children encoutered separate situations that needed "damage control" last night.

A-T affects the WHOLE family to a certain extent.

Amelia has had a really "tired" day today.
I have struggled to understand her speech and watched her stumble and stagger excessively.

Finally I spoke to immunology this afternoon.
I wanted to know how Amelia's blood tests results were.

"For an A-T child, her immune system is good at the moment. Her white blood cells are slightly lower than normal levels though.".

White blood cells ???
Isn't that linked to cancer ?????

After I questioned this he said they are not dangerously low but we will monitor them.

the past 2 days have been difficult emotionally.

I am having a moment where I am wondering "why us???".

I have two children going through something that most people will never have to deal with in their whole entire life.

Well at least writing this has got the tears flowing.


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