This might not resonate with many - I wonder if I’m in the minority. It’s something that struck me in the surrounding circumstances of our recent hospital admission. And this is the premise of my thoughts: I think, amongst many mental strains as a CF parent, one of the toughest is where there’s grey areas.
By that I mean areas where the treatment option is not clear or obvious.
Maybe there’s been a bad cough for weeks but nothing is coming up on any of the swabs, or something else that doesn’t fall into a norm (actually, as an aside, is there ever a “norm” with CF? Maybe I should say “something that doesn’t have a clear, outlined treatment plan”.) Where even the paediatrician and/or consultant don’t seem totally sure on the best course of action.
And so they ask you - you’re Arlo’s parents - which of these treatment options should we go with based on all the information we have surrounding this ‘grey area’? And you have to say yes to one of the options. And then you are left with the burden of whether it was the right choice.
All of this in a situation where you have already watched your child go through too much in their little life, and you keep wishing endlessly that you could go through it all for them.
Maybe you’ve agreed to IVs and now your child is having to be subjected to a second or third longline / cannula and they are crying so much and looking into your eyes questioning why this is going on. And you have to hold them in place so the doctors can do their job even though it is breaking your heart and making you question whether they’ll ever forgive you and if this was the right call.
Maybe it’s something else equally haunting.
When you’re constantly making decisions out of a place of love for your child, and a desire to do the best for your child, it is so tough to handle the burden of those decisions. And the constant questioning of whether you’ve made the right choice.
This isn’t intended to be a miserable, pitiful post. It’s just a raw account of how I feel sometimes.
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