Getting started

The reason for deciding to put my words down is simple, I have a child who is very ill and I need to talk about how I feel about this. I will also keep you informed about the journey we are going on, trying to get Alfie treated with medical cannabis. I will tell you about our experiences in hospital and with doctors. I’m sure they’ll be happy times and sad but I want you to come on our journey with me. With you all behind us we feel stronger and will achieve our goal, to give Alfie a wonderful, happy life that he deserves. I also want to focus on Alfie when he’s well, so you can understand why we’re so desperate to make him well. There’s thousands of children out there that are suffering, we must focus on making Alfie well and happy and how we’re going to make that happen.

I have looked for therapy and holistic ways in which to cope with my pain and to be honest some things work, some things dont but what does work for me is to talk about how Im feeling. Writing is a way of getting it out and feeling like someone is listening. Im very lucky that many people do want to listen to me but I find it really hard to personally open up to people so writing things down doesnt make me feel vulnerable. When I appeared on This Morning, I met a blogger, she was lovely and she said to me, write a blog, youre stuck at home all day and you have some many things going on in your head, just write it down. It was just a light bulb moment as I just thought ‘Yes’ this is brilliant, I can write and talk about what’s going on. I sometimes feel so isolated at home all the time, that writing will give me something for me, which is mine and no one else’s. Something I can do to feel connected and use my brain!

I realise that many people probably wont want to hear about the boring day I had at home trying to juggle my kids and the thought of what to make for dinner, but also I dont want to make this just about the drama. Whilst there is a lot of drama in our lives at the moment, there are also moments, of laughter and fun and many moments to be truly thankful for. As a carer to a child there are also loads of moments when you wish it wasn’t you doing it. I love my children more than anything but if I had a choice being one of their long term carers would not be a choice I’d make.

I have spent nearly five years consumed with fear and pain and feeling like I cant get up in the morning. I have gone from being a happy and confident person, to a person who has withdrawn from life because I feel so much pain about my sons condition and what I have to see him go through. This makes me so sad, I feel like I’ve lost myself the person I used to be. I’m hoping if I can make Alfie well that I’ll find her again.

I have started to try and take each day hour by hour and not think of the future or the past. The past makes me feel massively guilty, because I feel like I should’ve known and I should’ve protected my boy from the pain he faces and the future frightens me as I just cant face the fact that this situation that we face with Alfie could be something we have to deal with forever.

Thanks for reading. Much love xx

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