At some point, towards the end of 2012, I fell into a therapy funk. I stopped doing as much physio at home as I should. I stopped giving May a spoon to hold during her meals. Stopped showing her bright lights in our darkened bathroom while she took her evening bath. It wasn’t conscious. I didn’t even realize about the spoon until someone at May’s nursery asked me about it.
“No,” I said, feeling a simple truth slip from my mouth. “I don’t do that anymore.”
But, why? Why has this happened? I think it is the surgery.
It was shock to learn that, despite everything we have done, there was nothing that really that could have been done. I am suffocating under this idea. I haven’t written as many posts because I think: what is the point any of the stuff I’ve been doing and, furthermore, of encouraging other people to do the same?
It is not enough to do more. It has to work. There is a realism there that is uncomfortable for many people to deal with. May is not like all disabled children, cognitively she doesn’t understand all the enriching activities we do with her. That is also uncomfortable to accept.
But, if it doesn’t work, it isn’t worth it. May deserves more than being stuck in the car and shuffled from expert to expert. She needs to be challenged. Yes. And we will continue to challenge her. But, not for the sake of it. It must work.
So my New Years resolution this year is not to do more, it is to do less. To spend more time reading to May, cuddling her, tickling her, singing with her and all the things she loves. And, doing less of the things that I’m not sure benefit her and do because I feel I must.
I must not.