Winter of discontent

This winter has been hard for Dave. Hard for me. Hard for us. Dave’s daily function has been dwindling and impossible to ignore. CF has been asking more of us since Easter and I can’t shake the feeling that this is merely the start of what CF is going to exact from us.

It’s natural to feel tested in the tough times. It’s usual to feel strung out from simply surviving. It’s acceptable to feel anxious about the future, to worry about the what if’s, to be preoccupied with plans, to crave control of the uncontrollable. I’ve begun a lot of days with sighs. I’ve ended a lot of days with grumbles. I’ve lived a lot of days in discontent.

And that’s understandable.

But it’s not sustainable.

Dave and I have made decisions. To try and live in a positive frame of mind. To celebrate the wins – because they are there, if we choose to look for them. To reframe the losses – because losses are unavoidable, but they don’t have to dominate us.

Purple flowerThis looks like a high five when the scales show Dave has gained 100g of weight and a beaming smile when his lung function has increased by 0.05L. Grocery shopping together because Dave is well enough to walk and stand for that long. A trip to Barangaroo, a soak in the sun, and a warming of the bones. Finally committing to the difficult decision to pause the Orkambi trial whilst Dave tries a new medication. Dave enjoying marmalade again since it is banned on the trial and has not been allowed in our fridge for two years! Welcoming another hospital admission if needed to prevent further loss of lung function. Lunch with friends. Noticing the new leaves on the trees and flowers springing from the earth. Realising there is no silver bullet that we have to find – we can only do our best, and that’s what we are doing, and that’s good enough.

Our winter of discontent is over. Spring of content is here.


“But the good days, too, are the ones where we grow, where we struggle, where we learn, where we fight. Where we fall into bed in a heap of tears and cry ourselves to sleep and restoration. The good days are the ones where we get up in the morning to face another day, fry another egg, clean another toilet. They are ripe with persistence and endurance and patience and grace and forgiveness and love, even when it’s the kind through clenched teeth.

Especially when it’s the kind through clenched teeth.

They’re all good days.

They’re all new days.”

– Quote from Good days, Design for Mankind –


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