over a month in actual fact! To be honest, I’ve not really had much to say, well I feel like I’ve not had much to say anyway. Perhaps I actually have. Part of the reason is because I’ve been in the process of changing from Tumblr to my website (ta-dah) and I wanted to have a little play around with everything before I wrote any posts. Part of it is because we have just been so busy doing, what feels like, absolutely nothing. The truth is, this is an extremely busy time of year for James work-wise so my energies go into looking after Freddie and household chores. It’s made me realise how much I lean on him (probably unfairly) when his work is quieter.
Life has been stable, winter has been stable. We had a brief bump in the road last week with a hospital admission, virus and PEG site infection but everything has calmed down now. Freddie is fine and back to his usual self. Currently enjoying an afternoon out with James so I can crack on with some this (write this!).
Although Master Cheese has remained strong and stable this winter my heart has been heavy because there are a lot of mito warriors who haven’t been so lucky. I know of lots of children who have struggled; they’ve developmentally regressed, been intubated, for some children it has been touch and go as to whether they’ll even pull through, with long stays in hospital where, unfortunately, they are exposed to all sorts of horrible viruses throughout the winter months that could (and do) hinder recovery. Sadly, I heard two nights ago a little girl lost her battle, she’s not too dissimilar in age to Freddie. It always hurts immensely when I hear how sick some of the children are, especially when one grows their Angel wings. Of course I grieve, I grieve for the family, for all the families and for us too, knowing what will come one day and that it doesn’t matter how ‘well’ Freddie is doing it can happen very suddenly.
That part of my life is something I don’t really talk about to anyone, apart from James of course (who has said to me this winter ‘can we just have some good news, everything is bad’). That’s why The Lily Foundation are so important to all the mito families, because they can talk to people who understand. You can grieve together, get angry, comfort each other in a way nobody else can. It’s not that that part of our life is a secret but I can’t turn up for a coffee morning and start waffling on about all the sick children in hospital. Everything is relative and people don’t want to hear it, not really, and why would you? If you don’t live in that world, why would you want to hear all the shit? I wouldn’t! Sometimes it’s even a reality check for me because I get caught up in the whole ‘he’s doing so well’ that I kid myself we have much longer than we could, potentially, have with him.
I guess there are some days I just don’t really feel like I want to be in the mainstream world listening to mainstream problems, other days I really don’t mind. I suspect that’s just life, it all gets a bit too much for everyone at various points doesn’t it?
Probably not the post people were looking forward to reading, it’s certainly not a list of all Freddie’s current milestones and lots about how happy he is (that will come soon, I’m sure). I started this blog to cover my experience of our journey and, at the moment, this is where I’m at.
