We've had a break. This is a big event - a week away in another part of the country without most of the responsibilities or looking after our son. Well almost - we could only get a one week, and we didn't know until a day or so before that we would be able to go, and we did need to ring in to support/advise every day. But we did get away, got some relaxation and rest.
Fortunately, his chest behaved itself and we didn't have to come back early to sort out any critical issues. (we've had to in the past.) Thank you to the nurses and care provider organisations. I know it's their j0b and they get paid but they don't have to do it, the pay isn't that great and they do care about him - it's not just a job, and we're very grateful. They are good people.
I suppose this can be seen as an anti-rant, but there's a real danger the work these people do is taken for granted - it shouldn't be. I know we do his care for nothing, but if he wasn't disabled, would I do a job like this when I could probably get paid more doing something 'valuable' like banking. They do it and ought to be recognised for that. Thank you - you know who you all are - and we do appreciate you.