Is there anything worse then sitting and listening to your child’s breathing..? There is this fear that is just unimaginable. Like now, her fever is high, the wheeze is not so bad, but I can hear that she is starting to breathe faster… its like I am just WAITING. What the hell am I supposed to do? There is nothing I can do…. just wait. People don’t get it, no one gets it. I don’t need anyone to get it really, but the well meaning ‘oh, yeah, when such and such was little he was sick a lot too’ just makes me feel even more isolated and angry, because this kid is nothing like that kid, this is not a kid who is sick a lot, this is a kid who goes in to respiratory distress, falls unconscious etc etc, and it can happen at rocket speed! So I am sorry, sitting here watching my kid breathing… but that such and such kid that was sick a lot…. he/she is nothing like this. Im tired of this, Im tired of people not getting it, I am tired of it being belittled, Im tired of waiting… Im just so bloody tired. I wish (as horrible as it is) that there was someone out there who actually really ‘got it’. I think it would maybe, just maybe make me feel a bit less alone. I just want someone who understands, truly understands to give me a hug.
I know I know… I should stay positive etc, and I am always the one smiling, trying to laugh it off, shrugging with a smile and saying, ‘well hey, life goes on’ etc etc. I often tell people that we are the lucky ones, because its not a brain tumour or leukaemia etc. And I really DO mean it…. most of the time.
Its not so easy being that positive all the time. Its not so easy shrugging things off when fear holds your heart in a vice like grip and you think your brain might haemorrhage just from too many thoughts being in there.
I was talking to my husband the other day about what WE are going through, we as parents, and especially me as I am the one dealing with it all, and the truth is that if I actually had a job (which I don’t), I would probably end up being signed off for years due to hitting the wall, stress, burn out and whatever else you might want to call it. I cant be signed off of anything though, because this, here, sitting and listening to her breathing is my job, and there is no one else to do it.
How do you handle living like this? I have no idea… Im trying super hard to think about things like how the grass needs cutting and what we should have for dinner, although at the back of my head there is the hysterical voice going;
“ok its ok shes still breathing slowly, oxygen is 94 its still acceptable no need to panic just yet, what the hell should I do with V if we need to go to hospital, I wonder who will watch the dogs, should I pack the bag, wonder if there is a fridge in the hospital and if P’s mum can come and stay for a bit, shit what about the school party on saturday, is she still breathing for fucks sake calm down woman she’s ok we are still home just calm DOWN it will be ok it will be ok it will be ok… but what if its not, thank god she’s sleeping now, omg what if someone rings the door bell and wakes her, oh no… someone bloody well better not ring the doorbell I will KILL them, is she still breathing????”
Dr’s appointment in 5 hours and Im afraid its to late, that we will have to go to hospital before that……