There are so many ordinary, everyday things I never write about.

Phone calls. Someone rings Pádraig. I put the phone to his ear. He just keeps a straight face. Or he smiles. Or looks surprised. Makes an attempt to say something. But can’t (yet!). What is it like for the people talking to him?

Body hygiene. Getting washed. From your teeth to your toes. What kind of sensation is that?

Getting turned. Every 3-4 hours. The term itself is so strange.

People talking in the room. Doctors proposing treatment, discussing operations, thinking loud about how to handle the anaesthetic. Hello! Are you talking to moi?

IMG_0409Food. As I write it I feel so strongly that we must get rid of those plastic bags with this really unattractive brown liquid that drips through a plastic tube into his stomach. Let’s go for really sweet, really savoury, really hot, really mild, really sour, let’s go for appearance,  taste, texture, and smells.

Communication. We ask whether he likes or dislikes stuff, whether he is comfortable, whether something hurts (I never ask him though whether he likes my music or my jokes). He can tell us with his tongue. But what if he wants to say something and we are not asking they right questions? If he wants to initiate the ‘conversation’?

The list could go on.

Before my head hits the keyboard, some news: you know we’re planning to go to Lourdes in May. Today, I was wondering whether our Lady knows that we’re on the way and send us a miracle as encouragement. Here is what happened: I stretched out his left arm, asked him to keep it there for a moment, then asked him to lift it up, and he moved the lower part of his left arm up to his chest. Not once, but twice, and he would have done it more often had we continued with the exercise.

IMG_0411I am convinced that soon Pádraig will be able to eat and drink enough to keep him going. Even if he didn’t eat the semolina, soups, pureed potatoes, meats, veggies, yoghurts – he would just need to eat/drink five 200ml really tasty Fresubinis to get his calories.

Time to go to bed.

PS1:Today was the last day to get a regular registration for the Hamburg marathon. Last year I had to apply for late registration which was a bit nerve-racking. This year I (just about) made the deadline. Can’t believe I’m doing this.

PS2: Two nights ago, Maria was elected chair of the Irish society in TCD. When she told Pádraig over the phone last night, he looked so so happy and, no doubt, was so proud of her. I wonder what he said in his head to her…

PS3: They’re playing Stairways to Heaven on the radio. There’s a lady who’s sure all the glitter is gold… I was so proud when I learned to play the song on the guitar, that I played it at every party (remember ‘parties’?) I went to – I never got tired playing it, though I know I lost a few friends in the process… It was the music that counted. Who cares about people, especially when they don’t appreciate really cool, great music???!!!