“I’m worried”: Thoughts on Pandemic Parenting when your child has Cystic Fibrosis

I’ve been eaten alive with worry since my daughter was diagnosed with Cystic Fibrosis.
I’ve worried about viruses and bacteria every single day since.
I didn’t need Covid to fret.
I’m worried.

I worry that Covid could affect her like other viruses have before.
She’s been on oxygen; she’s been unable to breathe.
She’s been in an ambulance; she’s been delirious with hypoxia.
She uses Non-Invasive Ventilation at night.
I’m worried.

I worry that knowledge of respiratory distress is suddenly a good thing.
I worry about families who don’t know when to seek hospital help.
I’m grateful that I know how to measure and when to move.
I’m worried.

I worry that we don’t know enough, about the short term or the long.
I take heart that her team think she would do ok.
That most children do ok.
But it’s not guaranteed and I don’t want to find out.
I’m worried.

I worry when schools are open in case she catches it.
I worry when schools are closed in case the isolation hurts her more.
I’m worried.

I worry that she knows this isolation too well.
She’s done it before, while others carried on.
I’m worried.

I worry that her infinite resilience could in fact be finite.
She bounces back from everything, smiling.
It blows me away.
But can you be too good at dealing with stress?
I’m worried.

I worry that other parents will make bad choices.
That they’ll ignore that we’re all connected, whether we like it or not.
That their choices might undo our unlimited efforts to beat a life-limiting disease.
I’m worried.

I’m worried because we never see my parents.
Because they’re elderly and we want to protect them.
But constant level 5 means everyone’s failing to thrive.
I’m worried.

I’m worried that no matter what I do, it will be the wrong call.
I worry that worry will kill me before Covid ever does.
I’m worried.

I’m worried that my child with CF can’t get the vaccine.
I’m worried that Carers aren’t on the list.
I’m worried I have no tools other than to keep hiding at home.
I’m worried.

And yet the fact that I can see my worries and speak to them means I’m doing ok.
It means my resilience reserve isn’t empty.
I’m not worried that I’m worried.

But I’m worried this will never end.
Aren’t you?