Nobody wants to hear it

I know… that sounds dramatic. And it’s really not meant to, but it’s certainly something I have noticed since Arlo’s diagnosis.

And what I mean by this is that nobody wants to hear the shit stuff!

Maybe this is a British thing (because I know we all do it - CF or otherwise!).

When the fellow parent in the park says, “Oh, I think you should let them play in the mud and the puddles. It’s SOOOOO good for them,” I daren’t tell her that we don’t let Arlo play in puddles because we are worried about pseudomonas - or even nastier bacteria - that might make a home in his lungs, might not be responsive to antibiotics, and (worst case) might cause permanent, irreversible damage.

And when a colleague asks how we are all doing during a hospital admission, I don’t say that I barely slept because Arlo had to have a new cannula put in at 2am and so I cried for an hour after the whole ordeal (IYKYK).

Or maybe it’s the family member asking how you’re feeling about things and you don’t want to tell them that you had a bad night because you learned of a really young person with CF who has made it onto the lung transplant list and it’s awakened your biggest CF mama fears.

All I know is that I often shy from the truth because I think that nobody wants to hear it. And honestly, sometimes that makes it feel more lonely than it should.

And I think I am only writing this because Arlo IS doing well and I am in such a good headspace. ***touches wood***

But my message is - maybe we should tell them? Or maybe you can just tell me! I DO want to hear! Even if it’s shit!

#cfwarrior

#cysticfibrosis

#cf

#cfirl

#lifeofacfparent

#whatthecf

#amummiesguidetocf

#cysticfibrosistribe

#medicalparent

#parentcarer