"It must be very hard work looking after him"
"Don't know how you do it, I couldn't"
"I don't know how you manage"
which refer to my son's care, I find incredibly frustrating ( but not to be confused with when our friends and family say similar and are directing their comments at the whole fuck on that is dealing with community services, appointments, fighting for equipment etc). These pearls are normally happily offered up by people we don't know, focusing always on the negative, with no idea of the glorious moments we get to spend with our son. Life can be hard, and difficult at times, but who's isn't? We all face challenges in our lives, for most people they just come a bit later. Yes you could do it ( it's not after all a choice) and, well, you just sort of stumble through life managing, occasionally wondering how you manage but not questioning it in too much detail in case all of a sudden things go completely tits up and you are back to not managing. If that makes sense?
It's interesting that we use the word "manage" in this context as when you find yourself thrown into the complicated world of disability ( whether for yourself or as a carer) you do in fact suddenly become a "manager". Staff on payroll, organizing and attending meetings, writing firm letters and emails, endless phone calls, and a shared calendar for appointments. Never much fancied being a manager if I'm honest, anyone who ever saw the giant piles of paperwork on my old lab benches can attest to that.
Oh well.
Anyway, so this week we were told that the hospital is no longer willing to keep replacing our son's gjet ( the feeding device with two ports, one for the stomach, one to the jejunum he uses for nutrition). It's "too expensive" and is "putting a strain on the service" to replace them when they break. Them breaking is "undoubtably due to the blended food you use" not that the device itself is actually a bit pants. Note the blame on me there not the device. I was too focussed at the time on all of the other things we were there to discuss to think to take umbrage at this. Yes the gastric port has gone twice ( not while in our care), but it's also come out, and part of it actually fell off, all of which resulted in replacements, none of which had anything to do with the feed at all. Now to be honest I was starting to consider a surgical Jej as a good idea in the long term anyway, which is probably the reason I didn't completely lose my shit at the "expensive" and "strain" words. I do sometimes wonder if they comprehend the extent to which we "manage" at home without rocking up to hospital. We don't like to bother them most of the time, and hospital is a pretty shitty place to be and so we avoid it like the plague. No GP or A and E visits from this residence for ridiculous reasons. I think even a broken limb would have me say " hmm, let's see how it is in the morning" ( not really obviously). The only downside to this is that sometimes doctors don't realise how tricky symptoms have become because they aren't given the opportunity to observe them. Not their fault at all. But I do believe the gjet replacements we have had must be cheaper than a hospital stay for Nate every week or so. But what do I know eh.
So Nate is being referred for a op where he will have a surgical Jejunostomy inserted. I mean we would hate to be a burden or strain on a service and have any unnecessary surgery...
Back to this whole media promoted, lack of adequate education driven idea that people such as my son are a drain, and a burden. Yes he is undoubtably costly to local authorities and the health service. But his life matters. The minute we start picking apart society in terms of who's life matters more we start on a slippery downward spiral. I'd happily rate "who matters more" based on twatishness...
"No you can't have that medicine/ operation/ because you are an utter twat"
See that's why I'm not in charge.
Nate is a delight to all who know him, and keeps many people in employment. Specialist jobs exist because of people like him. But not just that, knowing and loving someone like him can shape who you are and make you look at life a little differently.
Which is nothing to be sneezed at...
#mychildmatters
