So what’s been happening with us? Well after a long period where Nate was having a multitude of tonic events at night which were becoming increasingly difficult to deal with, he was started on clobazam. We persevered as we increased the dose but it just zonked him out to be honest. It didn’t seem to have much effect ( if any) on the "no air entry" events while sleeping and so we weaned him off in November. It was once weaned that a really good run began. And I mean REALLY good. He wasn't even having the typical apnoeas he's had since he was a baby. Although he did begin to have seizures during the day, but he does breathe during those ones so, you know, cling to the positives. This combined with the fact everyone he comes into contact with is masked has resulted in the healthiest Natie he’s ever been at Christmas. So while it was the oddest Christmas we’ve had ( chilly garden visits) it wasn’t as horrendous as it could have been.
I’ve realised I don’t think I’ve shown Nate’s new room. It’s Avengers themed! He particular loves his funky lights. All done by Michael and his dad. There was some assistance by Thea, but judging by the yelling I suspect this was minimal. The final addition completing Nate's room is H track hoisting which is going in as I type.
And now? Well not much has changed. We’ve cancelled all face to face appointments but as a family we are still going to work and school ( see http://theaandnatesmam.blogspot.com/2020/07/end-of-summer-term-at-least-i-think-it.html?m=1 which covers why we made that decision).
My daughter is very happy to be in her school building with a few friends doing online learning, and her brother is benefiting from his usual access to therapy and resources which he missed out on March- July. As a family with reduced access to the big outside world this isn’t very different to how we’ve lived for many years. Especially with no respite. With Nate, his equipment, and his variable health, we’ve always had to think very carefully before venturing out and about, and more often than not stayed home. We did a carers assessment the other week which was really fucking depressing. Michael naffed off on a “work call” half way through which was suspiciously convenient. We both realised that without a shit load of planning we don’t get to do much at all as a couple, or with our daughter. And even then it’s unlikely to be able to be arranged. We had to call in a lot of favours just to be able to attend family funerals. How wrong is that. So yeah, lockdown, not that different for us. Although I would murder a pint.
The longer this situation goes on the more everyones mental health suffers. I’m feeling it in particular at the minute as I don’t think I was exactly top notch pre COVID. Throw a global pandemic at us carers and watch the slow build of anxiety and depression as we absorb the national situation with fun additional worries such as how long will an ambulance take if we need one? I tried to explain all of this to the GP I spoke to last week and I don’t think she grasped the utter shittiness of the carer situation. Can you request to have “donkey on the edge” written on your notes? It would give them a bit a prior warning of what to expect. I think I confused her with my nervous laugh while trying to explain that Nate's good run of 8 weeks of no bloody scary night time events just means I am waiting for something pretty spectacular to occur, and not in a good way. Needless to say the good run is over and I’m now feeling less anxious. Which probably doesn’t make a great deal of sense to anyone but me...
I truly wouldn’t like to unpick what’s going on inside my head.
After months and months of utter fury at the TV and social media. At those "governing” us, the maskless wankers, the anti vaxxers, and the COVID data deniers, I had started to feel like the end of this whole fucking shit show was in sight but then you throw the inevitable new virus variants into the mix. Let's hope we get vaccinated before the virus mutates in a way which means the vaccine needs a tweak. Nate doesn’t qualify for a jab as he is only 10, but I did see good news in that parent carers are now in group 6 for the vaccine so we should get it fairly soon (or at some point anyway). I’m now less worried about the kids becoming infected and more concerned about who the very fuck will look after Nate if me and Michael are ill at the same time. Catastrophe. I suppose they would have to admit him to a paeds ward. Not that this has been discussed. But no one would know what to do with him. There’s been no discussion or planning. I feel like I need a plan.
Why haven’t I got a plan?
FUCKSAKE
Yes a ward could deal with the big issues when they arose but they wouldn’t have a clue about all of those smaller signs we spot or routines we do to keep him safe. Fuck. I mean to some extent we’ve always lived like this. Parent carers aren’t allowed to get ill, especially not seriously. We do not have the time for it and I say this only half in jest.
Thea is having her first lateral flow test at school today. That will be a delight for those involved I'm sure. Good luck to them.. I've no idea how testing will work in large school settings, and I expect in many it simply won't. I volunteered to help out with them at my workplace but there aren't many schools with the space, staffing and nursing to ensure they are done well. In an ideal world I don't think COVID testing should be added to the already long list of school staff tasks by this inept government. A government who are so far detached from the reality of schooling that they may as well of tasked us with wrangling sheep when they deposited thousands of testing kits on the first day of term. But anything that gives us back a little bit of control, and some reassurance despite its inaccuracies, is worth taking part in in some capacity.
I am continuously shocked by how many people are still not listening to guidance. I know everyone is fed up but we still need to do our bit and make sensible choices to keep everyone safe. I don't give a shit if you think COVID won't make you ill- its making others ill, hospitals are struggling - good luck getting that ICU bed when you have an accident.
If you are of the opinion "nothing's going to stop me seeing by family and friends" stop being an absolute weapon, and you know what- never has that little bit of slang been so appropriate. You can infect others, do you want deaths on your conscience? Even selfish dickheads care about their relatives...surely?
You don't want to be vaccinated? That's your choice but stop sharing utter wanky lies you've seen on social media. How about a fact check.
Anyway here's a Fred pic to end on a happier note.
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