Its been a while since I’ve written. Lots of things are going round and round my head all the time but I just don’t seem to get time to sit and write it down. I’ve been feeling quite low, things are tough when Alfie gets out of hospital he can be aggressive and random and not our son and we feel such grief about it. He did manage to get to school on Thursday and Friday last week and he went swimming on Friday morning, he absolutely loved it. It made me feel such pride to watch him in the water with Miss Fearn his one to one. He smiled so much and called my name, I felt so tearful, I really do appreciate these small events they are what keep us all going. I talked to some of the mums too about life and I just loved feeling normal, just doing normal mummy things.
Two weeks ago I dislocated my knee. I did it on Alfie’s bed side when we were in hospital. I can’t believe I did it really it was such a freak accident, but my mind isn’t on life, it’s so all over the place I probably wasn’t concentrating. It was so painful and frightening, I screamed so much I think the nurses on the ward must think I’m nuts, I just struggle to stay calm, I think I feel such anxiety all the time that it comes out so quickly I can’t control it.
I always believe a positive comes from everything and the only thing I feel is that hurting my knee has made me stop, I can’t do what I used to do and the world hasn’t ended! The house is still standing and actually it’s made me realise that I need to learn to just relax and try not to feel like if I’m on hyper alert all the time Alfie will not have seizures, as that’s how I’ve felt before. If I’m full of adrenaline all the time it won’t make the situation we find ourselves in any easier. It won’t change anything it just makes me ill I feel like I’m going over the edge, most of the time and nothing can stop me. Now I’ve had to stop, it’s stopped me I can’t be on edge because I can’t do anything. As I say I think everything happens for a reason.
Were not sure where Alfie’s story will take us, we’re so desperate to help him all I can say is we need faith, faith to know that something will turn up, we may raise enough money to take him abroad, or the new diet might work, or the seizures might just stop for a bit (this can sometimes happen with this condition), but to know that so many people believe in us and have faith in us has really spurred us on to keep going and determined to make Alfie well. You have given us the power to hope that is so powerful!
I’ve met some amazing people and spoken to people who are truly inspiring. I truly believe that the legalisation of medical cannabis is only a matter of time we just have to keep making people aware and fighting for what we believe our son and many other poorly children deserve. The chance at a good and happy life.
Much love xxxx ❤❤❤❤