With our other children, the small terrors of early parenthood passed quickly – but with our youngest, Sam, they have never gone. I often wake in the night and wait to hear him breathe. Often, I wake to hear him coughing and spluttering, and have to quickly jump up to gently tap out his chest to help him work it clear. This is because Sam has a range of disabilities which mean he’s susceptible to chest infections and other bugs. At just over a year old he’s been through more than most will ever have to face.

Waiting for your child to breathe is a terrifying but fleeting thing. The stress of waiting for coronavirus feels slower, more unique, less solvable. 

It’s a small, repeated dread of what’s under your fingernails. It’s a frustration that you can’t really be sure you’ve dealt with it. It’s the subdued anger you feel at people around you who flippantly say they don’t mind as ‘they’ll probably be okay’, not understanding how much their disregard could harm your child. It’s the ‘keep calm and carry on’ message from the government that appears to have gambled your family’s wellbeing against the economics of more stringent measures. It’s your powerlessness in the face of all these things and the inevitability of the wait.

Waiting is a theme when caring for a young child with disabilities. Waiting for appointments, or in A&E, or for operations or to be discharged from hospital or from intensive care. And the waiting is painful, but you must deal with it, or you will go mad. 

I’m very aware that our wait is less stressful than many others. A lot of children with disabilities spend most of the winter in and out of A&E dealing with chest and other infections, and their wait must be truly terrifying. Meanwhile, people with suppressed immune systems because of cancer treatment or other illness must have watched the progress of coronavirus with growing dread. 

That growing dread is changing the way we live. The wiping down of surfaces and washing of hands have dramatically increased, and we’ve started a kind of compulsive temperature taking of everyone in our house. Visitors to our house are commanded to wash their hands and while in public over the past few days I’ve taken to covering my face as much as is possible and avoiding shops at busy times.

But the deeper impact is that for the past few weeks I’ve had an imaginary spider’s web in my head representing all the different networks and groups we’re a part of. School, work, friends, family and other groups all represent a different hub and a way one of us could catch coronavirus and bring it into the home. It’s a horrible way to think. But over the past couple of weeks we’ve been reducing the networks we’re exposed to, slowly folding our lives in on themselves until this week, when we made the decision to lock up shop. We’ll see how it goes over the next few weeks and months, but we’ve taken our other children out of school and decided to isolate our family in the hope it will protect our son.

This would have been unimaginable just a few years ago. Until recently we lived overseas doing aid work in far flung parts of the world. We tried to live more adventurously; we were your annoying, smug friends on Instagram doing amazing things in strange places with pretty sunsets.  Now we find ourselves shrinking slowly in on ourselves, fearful, more vulnerable and smaller.

In an ideal world, with a dangerous new virus out there in the population, my family and others like us would have spent the past few weeks trying to exercise the type of hand hygiene and other precautions you see in hospitals. The thing is, we haven’t been able to because, as much as we’ve tried, we can’t buy sanitiser or many other products anywhere.

Talking to families like ours or seeing their pleas online I know it is the same story across the country. As soon as sanitiser, masks or health products come into shops they are gone, stockpiled by a few panicked people despite the fact that others need it more. 

I understand the instinct, but I’m finding it increasingly hard to forgive it. Last week I shouted at a small shop owner who tried to justify selling a bottle of sanitiser at about four times its pre-crisis value. I know I won’t forget that when all this is over. I suspect that as soon as this is over people will start to tell the kind of rose-tinted ‘blitz’ stories about the stacks of toilet roll or boxes of hand sanitisers they had in their garage. Those same people will probably do sponsored fun runs for children’s hospitals or fundraisers for cancer charities. The hypocrisy for those of us who saw how they, our neighbours, acted in our time of real need will be sharp.

So far the Government seems to have done little to nothing of actual substance to protect vulnerable groups like us, or to ensure we are able to get hold of the kinds of things we need to protect themselves. 

So all we have left to do now is to close ourselves off from the world and to wait. Wait as I often wait to hear Sam breathe, because the reality is we have no other choice.

Matt Patterson is a former civil servant and political adviser. Follow him on Twitter at @MattPattv1

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