“What’s the matter Mummy” you ask, you’ve come out of your room to see. I’m on my knees in the bathroom scrubbing poo from the bath mat. I’m trying to stifle my sobs but one has escaped and reached your little ears.
“Nothing’s the matter love, Mummy’s ok, I’m just a bit tired” I reassure you and you scamper back to your room unravelling the loo roll as you go and leaving another trail of chaos for me to sort out. When I’ve finished scrubbing.
I’m crying because of the poo that I’m scrubbing. Because it’s on my feet and it smells. Ten minutes ago it was on your legs, feet, clothes and you’ve trodden it everywhere. It is the fifth time today that you’ve soiled and needed cleaning. I’m sobbing because your skin is sore, you’ve run out of clean trousers, I’ve already started the 4th wash of the day and now there’s more soiled clothes and a mat to add. I’m crying because I can’t keep up.
And because you’re 9 and you should be continent by now. And because I want to scream this ‘should’ at you and I feel guilty, so guilty for wanting to scream at you about your incontinence. Because you can’t help it.
I’m crying because you don’t care when you’re covered in poo. You say you don’t feel it coming. You discard your Incontinence pads, forget to put on your underwear, know that Mum will clean you anyway.
I’m crying because it’s so damn hard and unfair. We didn’t choose this. I’ve been thinking that a lot recently. Some people believe that we get what we focus on, what we believe in, what we aim for. For a while I chose to believe that your brain would heal, that I would find a therapy that would ‘just rewire’ the damaged parts and that you would ultimately be just fine. I’ve been holding onto that – there are always more strategies, therapies, special diets and supplements etc to try. But what if this is it?
You don’t know when you’re having a bowel movement. What if that’s ok? You will always need personal care and support with your toileting. Maybe that’s ok too? I still have a long way to go towards acceptance. I find it so hard to see your skin soiled and sore and I worry that you will be rejected and laughed at by the world. Your soiling is hardly your most unusual behaviour after all.
And that’s why I’m on the floor, scrubbing and sobbing. Because I’m worried about you and I’m exhausted.
What would the Stoics say? Perhaps that an exhausted parent in such a position should be focusing on cultivating resilience and inner strength? That the one thing of importance should be my inner state – it’s the only place I will find a haven.
‘And where can man find a calmer, more restful haven than in his own soul? Most of all, he whose inner state is so ordered, that he has only to penetrate thither to find himself in the midst of a great peace- a peace that, to my mind, is synonymous with ordeliness’. – Marcus Aurelius.
An ordered mind- that’s what is needed! Can I order one on Amazon?! In my exhausted state, I lack the clarity of thought to make sense of it all.