Its been seven days now since Alfie left hospital, and as the days roll past and Alfie is ok you’d think I would start to relax and enjoy life more. The truth is that I feel completely the opposite. I feel like Im waiting for the car to crash all the time. Im so on edge, I look at what he does, how he eats, when he goes to the toilet, I become obsessed with needing to know when he’s going to be in hospital. I suppose its a control thing, if I can predict the night it’ll happen then I can cope with it. But actually all Im doing it causing myself to feel really tense. My heart is racing all the time. I feel like Im ready to fight at all times. I dont sleep, every time Alfie moves at night I wake up and check he’s safe and not having a seizure.

I wish I could learn to relax and just take things in my stride, I wish I could just accept what is happening to him and know that we all cope when it happens. But all I think about is the way I feel when I have to hold Alfie after he’s had a seizure. What accident and emergency was like the last time I went in. Will we be able to get a cannula into him or not? Will he scream for ages until the medication works? All this goes round and round my head all day and night and it gets worse and worse until Alfie has seizures then it passes. Because when Im in the moment that scares me the most, when Im living the nightmare I realise I can cope and I am strong and I get on with it. But when Im just living in the fear of what might happen thats when I struggle to cope.

I dream of going to bed and sleeping without fear or worry, without waking up worrying about whether Alfie is breathing, whether he is alive or not, have I missed something? I dream about basic things like being able to have a bath and go to bed and read without having Alfie in my bed. I of course love him more than anything but I just wish I had my own space, somewhere that was for me and only me. Drew says things will change and it will get easier, he’s so positive, which is great. The little voice in my head tells me differently though, it tells me that this will be my life forever.

When I look at Alfie when he’s well, I see such a wonderful, happy little boy who loves his rugby ball and being at the park. Life is so simple for children they dont need much to be happy, just someone to spend time with them and for them to feel loved. Im so lucky to have him, I just wish I could make him well. I have it in my heart that I can not accept his fate. I will not accept that this is his life and thats it. I will not accept that this is my life and thats it. I want to be happy and enjoy my life with my family. Now this has happened to me, I have grown up so much, I realise what matters and what doesn’t. If you have health and love, you dont need anything else, its all just a bonus.