Sunday in the living room. Candles. Cracking fire. Exercise. Music. A bit of cake and tea. Outside: wind and rain and darkness. First day of Advent.

While I was cleaning up (just a little), I came across a CD I burnt in Hamburg when Pádraig’s friends had sent me the title of songs that he liked. Mundy, The Killers and more really good music. His favourites. We had not listened to this music for a long time.

It sounded really old. From a far away time.

And then I was thinking. This is what he liked back then. More than five years ago.

I can’t keep playing this music thinking these are his favourite songs.

He was the kind of person who would put an album of a group he was going to see on repeat until he knew all the words off by heart.

Which groups would he go to see today? Five years are a long time on the music scene.

Can you help me and let me know what kind of music has come out over the past year (or two or three) that you think he would have liked? What are your favourite groups and songs of the past few years?

That would be really nice Christmas present for Pádraig: one (or a few) CDs (of USB sticks) with new, cool, interesting music. We could then ask him: who do you love best? Who is not so good? And we could help him to put his top 30 together himself. His new, 2018 favourites.

My life is going to end. That is inevitable. But living a life that I can be proud of, a life that is meaningful, that is full of compassion and love – that is something I can control. I might not always be successful in doing the right thing (whatever that is), I might think that, at times, my life is spiralling out of control, or that I am in a situation where I do not have choices – but I always do, whether I see them or not.

What do I need to do to look beyond my present circumstances and realise the opportunities life presents to me (and some of those ‘opportunities’ might feel more like disasters when they come along)?

Everybody over 40 in Ireland knows the Blue Nun. Not just in Ireland, but in the U.K. and in the USA too. She was phenomenally successful especially in the 1980s. The slim, sleek bottle of German white wine was a safe present to bring along to almost any occasion. In many off licenses, it was, in fact, the only choice of white wine, at least in Dublin.

The Red Nuns in Dublin’s Drumcondra are an enclosed comtemplative order with a long history in the neighbourhood. One of the thing they do, in addition to praying, is making personalised candles. They made one for last night’s event, Wintersong by Candlelight. And Pádraig will be able to keep their candle alight during the long winter nights.

The pictures don’t do justice to this wonderful, magic evening in the company of the most wonderful and gifted people. The range of music, of song, of wise words. The people: young and old, all in love with the art they presented. Where would you find this? In a world that too often seems to focus on profit, business, competition, margins.

After the most wonderful evening in the church everybody moved to the parish centre for mulled wine, minced pies, hot chocolate and marshmallows – and the auction, followed by the longest raffle  I have attended in my whole life. The auction achieved record prizes for an item donated by friends of Pádraig, as well as the Bank of Ireland (!). The kilt went straight up another 50 euro when the auctioneer promised to wear it on the night – which he duly did. The fabulous meal by New Zealand young chef of the year delivered in a private house and prepared to order, with wine, achieved a prize I have never seen in a charity auction.

It was an outstanding, inspiring evening.

At a ceremony in St Pat’s college tonight the College remembered those who didn’t make it to the end of the year. Pádraig went to remember two of his very good friends who died over the past year, Gabrielle and Louise. The ceremony took place in the chapel of St Pst’s college.

While we were there we noticed a couple of photographs. They must have been taken during Sunday Mass, maybe some 20 year when the priest gathered the kids around him and talked to them for a while.

I might be wrong but I’m nearly sure that I discovered Pádraig and one of his sisters, on the left.

One of the reflections of the commemorative service last night was about cherishing memories. Be grateful for the years and the moments, happy and sad, we spent with our loved ones. I still find that terribly difficult without getting sad.

Don’t forget tomorrow’s event of reflection, music, poetry, and song – followed by an auction and raffle, all in aid of Caring for Pádraig.

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Tonight, St Patrick’s College, Drumcondra, now known as the DCU Campus Drumcondra, opened their new Seamus Heaney Lecture Theatre, in the presence of Seamus Heaney’s family, several present and former DCU presidents, Attorney General, EU Commissioner, famous journalist Fintan O’Toole (who gave the keynote), and Pádraig and myself.

It made me think that I’m missing intellectual stimulation. And I am sure Pádraig is too.

Now let’s see what we can do about it.

Can you believe it, I mean, can you really and truly believe that nobody, no Occupational Therapist, no Spech and Language Therapist, no Rehabilitation Doctor, none of the professional rehabilitation experts had ever tried to see whether Pádraig could read? I mean, it has been five years, more than five years actually, since Pádraig had the accident. He’s had endless tests, has worked with dozens of therapists, there were electrodes put on his head to measure his brain activity.and no-one ever had the idea or even the curiosity to find out whether he could read. Maybe what happened was that no-body could think of a way to find out whether he could.

Up until yesterday that is, when we ourselves came up with a surprisingly simple way. Actually too simple for Pádraig to ‘play ball’, it turned out  When we asked Pádraig to look and remember cards with simple words written on them, he read and remembered them – but only twice because, and that’s what he told us, this exercise was so insultantly simple that he decided that it  was too stupid a ‘game’ and so he stopped ‘playing’.

Today, we tried something a bit more interesting and a bit more challenging – but still too simple, I’m sure. Check out the screens below. We showed him the screen, asked him whether a, b, c, or d was the right answer, and to bleep after we said “a” then “b” then “c” and then “d”. We never read out the question and never read out the possible answers, just “a, b, c, d”.

We tried a few screen and in each case he got the right answer. Only that in this case what was most important was that he read and understood the question in *addition* to getting the answers right.

Simple. Right?

So simple that even us, bloody amateurs, could come up with it.

A first. Not necessarily for Pádraig. He probably has been reading something every day for some time. But for us. Now we know that he can read. And that we need to challenge him much, but much much more. Not just physically.

Want to get into the Christmas spirit? Do you live around Dublin? Then you’ll have to join us this coming Thursday for Wintersong by Candlelight in Our Lady of Dolours, Glasnevin. For a second year running, our neighbouring Parish has decided to organise an event of music, song and reflection. Afterwards, there will be mulled wine, mince pies, hot chocolate and marshmallow in the Parish centre – and a raffle and auction. All in aid of Caring for Pádraig. (The committee are still gratefully accepting prizes for the raffle.)

If you are on Facebook, check out the event page and share it with your friends.

Pádraig had a friend visiting today he hadn’t seen for almost two years, as he has been living abroad. They had a great time catching up on each other’s lives. We assisted Pádraig sharing his experiences and thoughts with his friend. It reminded me how important it is to get him to use and learn about a better communication system which he has but which we haven’t used regularly enough. The visit also brought back home the need for him with people of his age who through sharing aspects of their life with him keeps him in touch with what is going on out there, what young people of his age are doing, what their worries, hopes, and aspirations are. What they think about life and stuff going on in their world.

Am I sad that his life is different, would I prefer if he was more independent, had more opportunities? I could cry my eyes out if I start thinking that way.

But I’m having too many of these moments when tears just shoot into my eyes and my nose starts running even worse than it does already with my cold.

I want to think about the good aspects of Pádraig’s life, the things he can do, the course he is charting for himself. A course that is so different from what would have been the generally accepted no-hope “pathway”. I want to think about the family and friends and strangers who have been supporting him and us to sail down this stream in his Dreamboat. Defying medical “wisdom”.

I have a cold. Pádraig’s carer who usually comes in on a Saturday has a cold (and couldn’t come today). So Pádraig and I took it slow and easy. And we managed. We now know that we cannot just go swimming and manage, we also manage the shower. Talk about a confidence boost.

This afternoon, I went into town to see all the Black Friday bargains that had survived to the weekend. I came back empty handed and reassured that I am not missing much by not joining the shopping frenzy.

Saturday evening is mass time, a kind of spiritual get together of neighbours and people I never really knew – that is until Pádraig’s accident. Now there’s many people who say ‘hello’, and ask how everybody is,

Please don’t forget the Wintersong by Candlelight event this coming Thursday.

This “Breathe in. Breathe out” stuff is a complete waste of time. Where did they get the idea that this is something you need to practice? You need to do a course on? And pay for! I mean: really?

I had to join a weekend course in my first part-time job in adult education in a little town outside of Cologne where they did this as a warm-up exercise and I was convinced that they were all slightly nuts.

The next session on this course was about self-perception. And all of a sudden, we weren’t just breathing together, in and out, people started to tell us, complete strangers, their life stories! “Haven’t they got friends they can talk to about this stuff?”, I thought.

A few decades later, I’m doing a mindfulness course where they’re doing exactly this: breathing in and out, telling each other how they feel about it.

I’m feeling fine.

Pádraig had a good day today, with physio in the morning, a good lunch, a good rest, some more exercise and chat, a lovely dinner and sss

Did you know that the blood vessels that are present in the brain are almost 100,000 miles in length?