Knowledge is power - and it doesn’t make us any less positive - it makes us ready to fight

It’s the start of cystic fibrosis awareness month and my social media feed is full to the brim of those in the CF community sharing facts and insights into their lives with CF.

And - oh my goodness - I am HERE for it! Because I am always shocked how little people know about CF - and now I am part of this community I am also keenly aware how complex a condition it is.

And it’s got me thinking about the concept of sharing knowledge and the need for knowledge as a parent to a baby with CF.

Because knowledge really is power when it comes to a condition like CF.

I remember when Arlo was first diagnosed, I immediately wanted to know EVERYTHING about CF - and ever since that moment I have been striving to learn as much as I can.

I think some people misunderstand my hunger for knowledge (of both the condition itself and the many/varied possibilities of how CF could present itself for our little man) as some kind of ‘negative thinking’ or negative mindset. I think some see this as me almost waiting for the worst - or expecting it.

But this isn’t the case at all. I think all parents of someone with CF tirelessly hope for the best possible outcome for their child - and we put in the WORK with physio/meds/hospital trips to give our CF-ers the best possible chance in life. However, knowledge is power and we MUST be armed with the knowledge that will help us to do the best for our CF-er if things do not play out as we’d hope.

This isn’t negativity, it’s being ready to keep fighting for our children, to make sure they will always have what they need to have the best chances in life - and staying one step ahead of this condition which we know has the power to flip on its head at any moment!

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