CF Mum Guilt - the “I gave you a genetic condition” kind! Just focus on what you can control mama🙏

Mum guilt when Arlo was first diagnosed - my notes in hindsight:

No matter how determined we were to be optimistic about Arlo’s diagnosis, there were moments where I felt so unbelievably guilty. I think it was mostly guilt that I couldn’t take the cystic fib on Arlo’s behalf - or take it away from him somehow - and that I had given him a condition (even if it was unknowingly given) that would have some level of implications for his whole life.

I know all parents want to take their child’s pain away and this was a recurring feeling for me in the first week after Arlo’s diagnosis - and I am sure it will come back in the future.

The best thing to do in these moments is to remind yourself that all families face challenges and you just have to focus on what you can control and how much you have to be grateful for.

It is rubbish that Arlo lost out on the genetics lottery - but that’s all it is - and we must focus on what we can achieve for Arlo - and what he can/will achieve for himself.

Read on in my diary entry below:

Thursday 27th August 2020

Arlo’s age: 4 weeks and 1 day

Had a cry this evening. Caught myself off guard to be honest. I guess I thought I’d cried all the tears and now there’d be only positive or proactive or optimistic thoughts.

But I think in reality this will happen a lot whilst it’s still quite ‘raw’ for Martyn and I.

There’s quite naturally times when you allow yourself some rather self indulgent thoughts like: “Why us? Why our family? It’s so unfair!” But these thoughts serve no purpose. They are the ugliest thoughts and it’s such wasted energy that I don’t allow myself to think them for more than a second. If that!

The biggest feeling is guilt. I just wish I could take the CF on Arlo’s behalf - and anything unpleasant that comes with it.

You allow yourself to think things like: Why did we not think to get screened? Especially given we have a close friend with CF? Why did we not think that this could happen? But then screening would have led to IVF to remove any chances of our child having CF and then we wouldn’t have Arlo and that is not worth thinking about...

And you think: This is not what I wanted for Arlo. I wanted the best, the easiest, the healthiest everything for him! How much will he have to suffer? Why can’t I carry that suffering for him? When will we know how bad this can get for us?

And when you look at him blissfully unaware and the most gorgeous, happy little bub and it breaks my heart that there’ll be any pain or hardship in his life at all.

But really all we have is an early warning of Arlo’s challenges. There’s no guarantee that your baby will be healthy and actually often there’s always something - ADHD, asthma, autism, epilepsy, other illnesses etc etc - just to name a few close to home.

This is our ‘thing’ and we are going to make the very best of it. That’s all we should focus on. Focus on what we can do and what we can control.