I had a thought last night in bed (all my important and very non-important thoughts come to me while going to sleep, all mixed up like half eaten trifle) “today I will write about his diagnosis!”. How it all came about, and how we are NOT inspirational, we are mere parents, doing what we can, what we all would. Only, I looked back and saw that I’d already done this (see here).
Maybe my originality blogging has come to an end? Do I only now have the present and future to write about? The present being so mixed, and the future, so fucking uncertain? I wish, deep in my bones, that I could say with conviction that the future only looks bright and full of hope. Only, right now it feels like we’re in a never ending cycle of infection, inflammation and extra treatment (this last two weeks, it’s fever and headaches, an increasingly angry sounding chest and LF down by a further 10%).
One day, I will write with news of a drug that will treat the underlying cause of Isaac’s rare mutation of the CF disease. Then I will flood you with joy, rainbows and flutterbys. I promise x
NEWS OF MY NEXT FUNDRAISER COMING SOON!
Cystic Fibrosis is a life limiting, genetic condition, affecting some 10,000 people in the UK alone. CF sufferers often, as a last resort, need to trade in their damaged CF lungs for the lungs of a generous stranger. To sign up to support organ transplantation, please visit https://www.organdonation.nhs.uk/ and tell your loved ones of your wishes, as even when signed up, the decision becomes theirs after death. Thank you.
Images: Best friends and best places.
