Not Too Terrible

Exeter - my city in early morning rain a few weeks ago.....walking back home after taking my car to the garage to have new brake pads fitted.

This morning the speech and language therapist watches Robin as I feed him a whole bowl of mashed banana and yoghurt. She feels his throat while he swallows. She says it's good to have a pureed diet now and no more drinking with a straw. He drinks a cup of some gelled fibre juice from an open cup.

She says his swallow is worse than last time she saw him.

She brings the book of photos and words she has made to help Robin communicate things like Scratch my nose and What time is Family Guy on? Robin is alert and cheerful and understands everything she says. But I'm not sure he will use the book just yet.

When the young doctor comes and asks him how he is he says,

Not too terrible. Just like he used to.

 When our lovely MND support lady comes he listens to her for a while and then yawns and says, 

I want to go out. Now.

We chat a bit longer and when I start driving him to the sea I know he's already tired and  we turn back after 20 minutes.

 Just before  I get him into bed I say I will bring some more photos and pictures to put on the walls.

He says,

  "Well it depends how long I am here."

I just squeeze his hand and say I will bring some anyway. It's all part of his way of getting used to the idea.  At least that's what I'm telling myself. 

This afternoon I try and keep going but every time I sit down I fall asleep. So I give in. I cover myself with soft blankets on the sofa and let the quietness of the house envelop me.....and rest till the young man comes to discuss cutting the hedges in the garden. 

Then I pull myself back into this new life I find myself living at home......alone..... but still surrounded by the whole presence of Robin, and all his things, in his very palpable absence.