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.
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