My friend recently sent me a brilliantly constructed article from the BMJ, written by Stephanie the ‘Mum’ of a little girl with a life-limiting illness. The article is called ‘Don’t call me Mum‘.
The content really resonated and although unlike Stephanie’s daughter Daisy, Harry is considered life-threatened rather than life-limited. I read this and immediately thought, ‘Hell Yes’!
But then I got thinking; maybe calling the parent/carer ‘Mum’ is actually the fairest way to manage a system which is in crisis and the fairest way to balance scant resources, scant time and emotionally pressured meetings. Maybe being powerless to ‘control’ Harry’s condition is something which I have to accept/should accept/will learn to accept?
Stephanie was talking about being called ‘Mum’ by heath professionals which she felt and I think, quite rightly, undermines her skills and abilities and devalues her contribution and value in the meetings held with medical teams about her daughter’s care. Whilst, I should point out that the immediate team around Harry certainly DO know us all as people and these are people who I trust implicitly. There are wider medical networks/teams who certainly don’t and who probably shouldn’t?
There is something so disempowering about being called ‘Mum’ in a room of professionals, who are clearly in control. In the meetings, they usually look polished, respected and together. Whereas, I am often exhausted and sitting there trying to cover the gunk that Harry has wiped down my trouser leg or stifle prettified tears brought on by bad or uncertain news. They speak in terms that I don’t understand (and have yet to be brave enough to Google). But worse, there is an emotional imbalance which can never be bridged. I love Harry, they don’t. Whilst they care deeply, at the end of the day, their world doesn’t stop if he stops. Mine does. What they tell me in that meeting can make or break me. I can leave in pieces or conversely, leave on a high that no drug could possibly match. They on the other hand have to move on, onto the next patient and talk to the next ‘Mum’.
They know little of my skills, abilities. Nothing about my hopes for Harry, my dreams for our world together and for the responsibilities and roles that I fulfil in other parts of my non-medical related life. Nothing of my other children and of their needs. Of school commitments, of petty squabbles or lost homework and nothing about my day job.
Maybe in some ways maintaining this distance and keeping me at arms length, keeping me as ‘Mum’ makes life easier for all. What if they knew that Ellie, “Caroline’s daughter” had cried when she left with Harry for the hospital? Would that help push Harry’s case up the list, would that speed things along? Definitely not and it certainly shouldn’t!
I am not really sure how to end this post. I know that there are two sides. Treating me as a individual and not just Mum, may mean that if they ever have to break bad news then breaking ‘Mum, rather than ‘Caroline’ or worse, ‘Caz’, is just that little easier to do. Maybe as the receiver of the care I forget the relentless nature of working in a caring role. Of seeing scared, distressed and often angry people on a daily basis. Perhaps staying a bit detached actually enables those working in such a pressurised environment to do the very best that they can. After-all who carers for carers?
Please remember, however the one person that who is truly invested today in the ‘team’ around Harry is Harry’s Mum or (and of course Dad) Caroline or as was written on a recent medical letter Mum Caroline..!