First Mother’s Day - Lessons of a mum to a bubba with a life limiting genetic condition

Musing on my first Mother’s Day I can’t help but think of how much I have grown and how much I have learnt since our wee man’s early arrival and diagnosis of CF.

Of course, in so many ways my ‘new mum’ journey is no different to that of all mums across the world. But I think some things can only truly be understood once you are on this side of the parenting fence - part of a family with a condition that falls under the rare disease category - or any unique family circumstances really. Because it is isolating and it does change the conversation.

Your biggest worry when you have a newborn should be whether they are sleeping, feeding, producing nappies - and maybe waiting for that glorious first smile.

But whilst all the Mumsnet or NCT or other forums are filled with panicked mothers worried about baby not sleeping in his cot for naps (or something similar), you are wishing that there was a forum that talks about giving enzymes or antibiotics or physio… and there aren’t any.

Instagram has been the golden ticket for me - since starting @lebigjogforcf and my blog. Finally I am connecting with other parents - and people with cystic fibrosis - who understand, can offer advice and who I can learn from. I am so grateful for all of you.💕And I will talk more on the power of the CF community another time because that is a force to be reckoned with.💪

But by far my biggest lesson of all is what a family affected by a rare condition like this really needs in those first few months. And what all people with rare diseases or unique family circumstances need. And that is to be listened to - truly listened to. And I am sharing this not to criticise but to educate.

I am now so aware of the comforting and supportive power of listening. I don’t think we do it enough these days. I was guilty of it too before I found myself here - we often think about how something relates to ourselves or our own experiences. Or we are too busy thinking about what to say. Or we try to offer advice in some way. But actually just listening is the best thing to do.

Because you will never know enough about that rare disease and that family’s situation to tell them anything they don’t know or anything that will really serve them. But to listen to them and acknowledge whatever challenges or other elements of their life they are sharing with you. Then you become someone validating their concerns and you become someone giving them power to continue their fight.

Hope this comes across in the right vain - and here’s to listening to all our mamas who need help in those first few months! I am here for you. And I am ready to listen without judgement, without comparison and without trying to serve myself. I will be listening purely to offer you support and to help you feel stronger.

Happy Mother’s Day!