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A Fascinating Look at How Covid is Affecting Trisomy Families



An alien world

Posted on May 5, 2020 by isabelsmum

Sometimes that’s how it feels these days. Like we have woken up in a strange new world where nothing makes sense any more. It is May 5th, only a few weeks since I last wrote in total disbelief that nobody seemed to be shocked that over 400 people had died in the UK. As of today the official figure is 29,427. Nearly 30,000 people in the space of a few short weeks. Even without the health service being overwhelmed, a town’s worth of people have had their lives cut short. Yet still there are people saying we shouldn’t still be locked down, that the figures are over estimated, that people are being too negative about it, that we can’t compare ourselves to all those other countries who seem to be doing better.

But the truly alien world is the way some people are seeming like they are pushing the interests of others, whilst at the same time doing exactly the opposite of what would be helpful to them. Maybe it has always been like this, but it is just so evident now. So people will argue that lockdown is bad for mental health, yet parade the fact that they don’t believe in complying with lockdown, giving people with anxiety MORE to worry about, not less. They will argue about the danger of missed hospital treatment, whilst failing to notice that much of this has been cancelled because it puts those patients at more risk to have treatment which affects their immunity – again this situation will improve by being more compliant with rules to stop the virus spreading, not less. Even those citing the economic effects don’t seem to think about the fact that businesses will struggle more to be open but with few customers than to be closed and receiving government funding to continue to pay staff.

And it sometimes feels that those of us with disabled children (or adults) to care for have been forgotten in the scrum to demand that we exit lockdown to “save the economy”/ “save those affected by being locked down”. Well that’s us, surely, too, yet it doesn’t feel like anyone saying these things is even aware of the problems people like us face. We have – until this pandemic – been lucky to have overnight care a few nights a week, as well as school and some ad hoc day care. Without this the physicality is exhausting – caring 24/7 for a child who doesn’t understand why there is no school, who needs entertaining, care and our constant input to replace the physical and educational therapies she is missing. Especially as she chooses now to have more nights than ever where she doesn’t settle until late or wakes in the night – we can’t just leave her, as she will fall asleep in a crumpled up position that then jeopardises her health. We could cope with this better if it felt like we were all in it together – it scares me that the time will come when others do escape back to normal and we are left behind, at home, “to protect her” – never has “protection” seemed like such a cop out for not actually DOING something which might reduce the need for being protected. It feels like all the onus for keeping those who are more medically vulnerable safe is put on those who are most vulnerable – an alien world indeed.

And this comes after weeks of feeling like we suddenly don’t count as much – the way that deaths have been reported, and regarded: “had an underlying health condition” making it OK somehow for a life to be cut short. Until now this has been the reason for working harder on treatments: the healthcare system has been set up to support people with underlying health conditions to overcome them, or at least manage them in the best way possible, but now it feels like that isn’t regarded as the right thing to do anymore, let’s just recognise that a health condition means you are an accepted casualty. No wonder this strange new world now feels so alien.

But there is hope, especially locally. We are so blessed to have people in our lives who know how to offer help. Not by saying, “If I can do something, let me know”, which is always hard to gauge (what size “something” is it OK to ask for here – nip to the post box for us or sort all our laundry? Which means we never ask…), but by the practical help – “I’m going shopping, do you need anything”, “Have you got any prescriptions I could collect for you”, “I will bring a meal round – is today or tomorrow better for you?”. So if you have read this far and really want to help someone, don’t campaign for an unsafe lockdown which is of no use to them whatsoever, do something tangible and practical. Because this is, in the end, the best campaign you could run for them in helping us all feel socially connected even when we have to be physically distant in this new alien world.

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