The other day I walked into our local cafe and the lovely lassie behind the counter asked how I was. I said “O.K” She replied “Really?” with a quizzical look. Then I gushed, about Matilda have been in the hospital emergency department on the weekend after her first seizure since leaving hosiptal and so on. As I walked away I wanted to kick myself. My mind kept saying – “She wasn’t really asking how you were. It’s just you know, manners. And now you’ve really brought her down!”
A few days later as I lit our fire I found an article that I hadn’t read in the newspaper about a family facing their worst fear everyday, as their daughter has Batten Disease (link here) Her mother explained that her TED talk was a….
“PG version of life” with a dying child. It didn’t include their bleakest and darkest moments, such as the times when she arrives at school pick-up fresh from talking to her daughter’s doctors about her end-of-life plan, or the never-ending rounds of doctors, specialists and therapists.
Something about this really resonated with me and my concern that I had been too publicly honest about how I was feeling. How are people to know what is really happening for carers or anyone for that matter, if we don’t let a little bit more of the truth out.
I don’t want to live in a PG version of life, I don’t want my nearest and dearest to have a disney-fied idea of what is happening in our home. I know that being open has its down sides – I do not want Matilda to misinterpret honesty for being ‘publicly shamed’ if we are for example talking about dealing with meltdowns and sometimes talking over things can bring you down rather then let you take a step into the next part of your day, your life.
It is a balancing act but I think for me, I have decided not to beat myself up if I tell people honestly how I feel, what is going on. As the kids have said since pre-school “Sharing is caring” and honesty enables understanding that can lead to compassion. So if I ask “How are you doing today?” remember I really want to know and not just the PG version.