If there’s one thing that raising an undiagnosed kid has taught me, it’s that living with uncertainty is hard. Not being able to imagine what the next year, month, week or even day might bring means that normal daily life is awkwardly bookended somewhere between denial and panic. You can fill the shelves with plenty of good stuff in between, but there are still days when the bookends themselves stand taller on the shelf than the many wonderful narratives they frame.
Today, the bookends seem to have grown like beanstalks after a long night of nourishing Spring rain. Somehow disarmingly taller in the morning, caricatures of the tiny seeds said goodnight to just the evening before.
Except these are the beanstalks of nightmares. Far uglier and more spectre-like than even the ones dreamed up by our infant selves after a particularly theatrical fairy tale reading before bed.
For many of us who have vulnerable family members, whether that’s a disabled child, a relative in treatment for cancer, or loved ones with long term conditions, we have been oscillating with greater frequency between denial and panic for some weeks now. Hoping that this viral colossus would swerve, or spare us, but with a rising, racing panic in our chests, galloping ever faster as the deafening silence from our government casts us further and further adrift.
Just a few weeks ago, gentle jokes flew around in offices and coffee shops about quite fancying the idea of two weeks at home. Not so much liking the idea of catching coronavirus, but if we had to hunker down for a bit, just imagine how organised our cupboards would be, the books we could read, the box-sets we could get stuck into… Even with the slightly alarming prospect of having to entertain the kids, it seemed to be a minor inconvenience, a distant and not too unpalatable concept.
For my own part, I had imagined that because we have a disabled child in the family, we might move on preparations a little earlier than most. Stocking up the cupboards, getting ahead on work projects, and being ready for the inevitable announcement that schools were to close. Special schools first, of course, because so many more of the children are vulnerable.
I trusted that this announcement would come well ahead of the threat of the virus itself. Many of us with disabled children thought the same. Cautiously ready, expecting to have to start our Easter holidays two or three weeks early.
Except it’s now Sunday evening, following a week of national lockdowns and school closures in just about every country but ours.
Three days ago our Prime Minister stood up on television and told the nation that ‘many more of us will lose loved ones before their time‘.
The medical and science experts who flanked him said nothing of how to avoid this human annihilation from happening, talking only of flattening curves by washing our hands, keeping football fans in stadiums and their loyal Tory fans off cruise ships while propping up the NHS by keeping schools and general society open for business while the virus sweeps through.
There was little talk of protecting those most at risk from this novel coronavirus.
Still nothing has officially emerged since that time to advise those most at risk, despite a rising death toll and exponential case growth against a backdrop of ever-decreasing diagnostic testing in the community.
However, government rhetoric since that day has erroneously cemented in the minds of media and the general population that ‘vulnerable’ is solely interchangeable with ‘elderly’ in the face of COVID-19. We are told (albeit informally for now), that soon our over-70s will be asked to keep themselves at home for months while this virus sweeps through like an interminable hurricane.
And yet our young vulnerable people, children with heart conditions, disabilities, epilepsy, respiratory impairments, are – according to current government advice – supposed to be packed off every day into what may be an invisible front line, the open beaches of public transport and school communities, where the silent hurricane could make first landfall.
Much has been made by our government leaders of having to set the country onto a war footing to see through this challenge.
And yet when we truly were last on a war footing as a nation, we protected our children and our most vulnerable from the front line. Not because they were the prime target of our enemy, but because that’s what civilised, humane societies do. 1.5 million children, pregnant women and disabled people were evacuated to safer locations in just two days.
Today, the threat we face is different but perhaps equal in magnitude and potential for suffering and loss of life. But we find ourselves in an information vacuum. Adrift and othered by the popular discourse that this is a ‘mild illness for most’, ‘children don’t seem to be badly affected’ and that we must ‘protect the elderly’.
We find ourselves nowhere.
As a parent of a disabled child who has no diagnosis, this is familiar territory. We are not a central part of any conversation. Sitting on the fringes of the disability community because most of us are not disabled ourselves, overlooked at the school gates because our experience of parenthood is so different, invisible in the workplace because we fall unceremoniously down the gaps between both parental and carers policies (where they even exist).
We are well versed in taking decisions to protect ourselves and our children and in doing so in isolation, because we do not fit the mould. We are well practised in spotting threats as they loom on the horizon and doing what we have to do to keep our children safe and well.
Often our instincts speak with razor sharp accuracy to pinpoint what needs to be done, well before the voices of medical or educational authority around us see it for themselves. We have witnessed them acting too late, too many times, to look to them now with unguarded faith.
With this experience behind us, and seeing more of the same as our government shapes its next Swiss-cheese tidings to the population in face of this new threat, it is with a familiar heavy hearted certainty that many of us will not be sending our children to school tomorrow morning.
We simply cannot trust our government to give the right advice to keep our vulnerable children safe.
Are we forgotten, or are we deliberately left out to perish?
I don’t know.
But with Darwinists and eugenics-sympathisers holding the rudder as we steer our ship through this storm, it feels safer to jump overboard while we can still swim for the shore and find a place to shelter while the hurricane passes.