Updated: Apr 18, 2020
It hasn’t changed!
Lydia is poorly again, and the hospital hasn’t changed – after our longest healthy and hospital free period with her of 10 months she picked up something that would leave you and I with a cough and a bit of a groggy feeling for a week.
However, the same thing leaves Lydia on life support in PICU (as she is now just over 2 weeks into admission).
It has been a frightening time as we feared the worst, but she has been improving and they’re talking about removing the life support tube today or tomorrow.
We’re here enough now to know pretty much all the nurses and doctors very well, as I said to one of the nurses today that we see them far more often than we see most of our family and friends.
It never gets easier seeing her so poorly but as we’re here so often it gets easier for friends and family to ignore that she’s poorly and just how hard it is to be in this situation.
It makes me think as I see children and their parents who have never been in this place before are surrounded by visitors, it seems many assume that we know what we’re doing now so we’ll be fine.
As a matter of fact, it gets harder doing this as the shock and support dwindles and the loneliness and difficulty of the situation take its toll on you physically and mentally.
One thing that is new, Ronald McDonald house
It’s a house full of parents of sick children, some people are very friendly, some are “experts” because they’ve been in for the last week and some are just outright odd – they steal people’s food, don’t consider anyone else and are on the brink of an ASBO.
We’ve stayed in these houses in Bristol and Liverpool and they’re all very similar people but it’s a good and very helpful charity.
Although all this is in place we’re reminded of how hard this life can be, seeing your child sick, speaking in medical lingo every waking hour, being torn between home, hospital, school and everywhere else, living with no privacy in a regularly, randomly inspected room and generally not sleeping as you go between concerned and exhausted but still struggle to pass into sleep.
There was a day or 2 where we didn’t see any improvement, we know what that means as it continues – sitting down for a “chat” in a comfortable room.
Thankfully she started to improve but your mind begins to run away, what if she doesn’t recover? How can I live without her? What can I do about it?
I can barely move or speak as I think of these things, but the hospital naturally brings up these sorts of awful thoughts and feelings as we witness some parents leaving without their precious children.
Oddly returning to the hospital after a long period away seemed harder than being regular visitors – We had gotten used to being normal (and hospital free) somewhat.
So, the news is that it doesn’t get any easier being away and coming back – We’re still trying to figure out, how do we live this hospital life?
It’s just as well that these children and those 10 months are so worth it