Recently we went to the Amy & Friends Conference, the first time seeing everyone in 2 years. I should have been excited. I should have been happy to be there. I wasn’t. I had literally 0 feelings towards going and even cried before going, the anxiety got a bit much.
Terri got herself all excited, going on about it daily for months… then there was me, dreading it…
As Terri’s health has deteriorated, I find it harder to deal with, even on a daily basis. I avoid talking about her, if anyone was to ask how she is “she’s good” would be the answer. In reality, she isn’t. I used to be able to talk about her none stop; she was my favourite subject – not anymore. I don’t want to accept she is going downhill and going to Amy & Friends was exactly that!
Watching her struggle where she had previously thrived broke my heart. She thought she would go to the conference and all of a sudden be able to do all the things she used too. She talked about taking her pram and baby, I think she forgets she can’t walk anymore. She didn’t enjoy the party, probably because she can’t see. It was nothing other than sad and shit.
I enjoyed seeing the people I have missed and catching up, but the more I thought about it the more I realised we shouldn’t have to be here. I would rather have not known these people – if Terri was healthy, I wouldn’t have. Why did she have to have Cockayne Syndrome? Why couldn’t she have just been my little sister without the naff genes?
I’m riding the wave, I am sure I will snap out of it eventually, just sometimes reality sets in and I remember what we have to come. A life without her.
Honestly, I don’t know what is wrong with me at the minute.
I am so happy with so much but so down all at the same time. I just want to sleep.
I suppose one positive is I hide it all quite well, I don’t want sympathy, what I want is Terri to be better and I can’t have that – so why would sympathy or "it's going to be ok" comments help me?
I hadn’t written in a while, but I’ve got so down I decided maybe if I write it all down and put it out into the world, I will have the motivation to sort my shit out.
I will be ok.
I will stop being a miserable cow.
I will make the most of loving Terri for as long as I can!
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