Whilst it was lovely, because Freddie slept like a dream and it was full of wonderful Christmas festivities, these stays are usually tinged with a bit of sadness too. This time was no exception and the first time I’ve returned home shedding a few tears.
Last month our respite was cancelled because a family were staying due to the nursing staff giving ‘end of life’ care to a child. This month we were able to stay on the proviso that we didn’t need any nursing cover for Freddie overnight and would care for him ourselves. The family were still there you see which meant the nursing staff, understandably, had other priorities. Usually we look after him overnight when we stay anyway however, on this occasion, we had been planning to ask to leave him so we could go out for dinner but it really didn’t matter. Instead we went to Waitrose for breakfast. Now I love a Waitrose (especially one linked to a John Lewis Home Store) so it was all good. Ultimately we still had one on one time and that is the main thing we try to get when we stay, it doesn’t really matter what it’s doing.
Anyway, it’s not my place to discuss any details but this stay has made me think a lot about Freddie and when we reach the dreaded ‘end of life’ stage.
Will he know he’s dying? Cognitively, will he understand what is happening? Will he be scared? Will he be in a vegetative state? I had always presumed he would by the time we reached the hospice for ‘end of life’ but maybe not? How long will it take? How will we cope? How will it feel? What time of year will it be? How quickly will he deteriorate? I always presumed it would be a very gradual thing and we’d know we were heading in that direction, but I guess it doesn’t always work like that? Even our experiences with him up to this point prove he change so quickly, but will life and death be that quick for him? How will we know it’s time and he definitely won’t improve again? Just so many things going around in my head. None of which we can actually be given a definitive answer at this moment in time.
Life is so cruel. I see these children, really sick children, and I feel they should be enjoying life and being able to live carefree. No tests. No alarms or reminders for medication. No hospital schedules. No equipment. I don’t usually say this but it’s not fair. They’ve not had a chance to live. Tonight I feel heavy hearted for the families currently receiving such essential care and help, the ones that have needed it previously and the ones that will need it.
I was supposed to be going out tonight, into London Town to see Pete Tong. I’ve not been into London for a night out since before I had Master Cheese – I don’t think?!! Although I just feel like I want to be at home. Suddenly it’s never seemed so important to be around to hold Freddie in my arms when he wakes up and snuggle up to him. When you don’t know how many cuddles you have left you need to be available to soak up every second of every one you’re offered. Thankfully, with him, I think they’ll be a lot. If there’s one thing my boy loves it’s a cuddle (Takes after his father in that respect, personally I like my own space and not to be man handled too much).
Anyway, on the back of this immensely happy post, I hope you all have a wonderfully festive weekend.
