Here is no. 3: Como esperando Abril by Silvio Rodriguez, a song announcing spring, with it brighter days, hope and better times to come. – Let me know which songs touched you in 2018 (or any other time) and why. I’ll collect the titles for Pádraig’s 2018 Christmas CD.

There are moments when I hear echoes of a different life, a different reality, a different time, of what was normality. There are moments when I feel how tired I really am. That’s when I realise what different perspectives, different life circumstances can do to you, making you believe that what you experience is what is reality, objective reality. It’s when I realise that it is anything but. I am frightened when I experience these moments, when I feel that I am living a life in a permanent state of emergency. And for the time being, there ain’t anything I can do about it.

I know I should, like everybody else, have regular sleep, eat healthy and regularly and not too late in the day, make sure to exercise, drink loads of water, have time for myself. I am sure all or some of these things will by on my list of New Year resolutions. I also know that, for whatever strange reasons, I will, if at all, only partially succeed in realising any of these resolutions.

Another great day in the swimming pool with a fantastic helper. It must be one of Pádraig’s favourite days. I have to think, sometimes, of another song I heard for the first time in 1980 in Salamanca. It has a line saying “¡Oh, no eres tú mi cantar no puedo cantar, ni quiero a este Jesús del madero sino al que anduvo en la mar!” – I don’t want to sing to the Jesus on the cross but to the one who walked across the sea.

Please send on more songs. Don’t leave Pádraig stuck having to put up with “my” songs!

Come on! Join the project to prepare a CD as Pádraig’s Christmas present with songs proposed by you, his friends, songs that meant something to you in 2018, songs that he (and I) might have missed because we’re not getting out enough… AND, let us know WHY you’re proposing it! – If you’re not the type who is out there discovering new stuff, send me a link to your most favourite song, an old reliable!

Share your songs in the comment section (just to have them all in one place …and I’ll let you know the songs that made the CD! (They will all make it.)

Here’s no. 1 on the list from Brenda:

Music is so powerful, so this is a wonderful project you’re taking on. I’m too old to be “hip,” but I heard this song (“Go Left” by Radiant Children) this year, and it just lit me up, so I’m sharing this with you and Padraig. Maybe one or both of you will like it! https://www.youtube.com/watch?v=ZUaCRQ8NFtE

Well, I think: nobody listening to this kind of music is too old. Just saying…

And here is no. 2, a fantastic song from the boys from Athy, Picture This, with This Christmas. 

“I hope that you find love
And all you’re dreaming of
This Christmas
And I hope that you find peace
And your mind is at ease
This Christmas, this Christmas”

Today, we went to the launch of Dublin City University’s Ability Project supporting people with disabilities to get back into the work place. The President of DCU was there, Finian McGrath (Minister for Disability), the CEO of St Michael’s House, and Joanne O’Riordan, the young woman from Cork who, some years ago, managed to get a speaking slot at the UN General Assembly, in her wheelchair and all. She made the point that her parents had to fight to get the right support for her since the day she was born. She said she like fighting as long as it helped those coming after her. She also said that we didn’t need more experts using big words but people on the ground who really cared. – There we have something in common.

As it happens, today is the 2018 International Day of Persons with Disabilities – IDPD a day, of which António Guterres, UN Secretary-General, said: “On this International Day, let us reaffirm our commitment to work together for a better world that is inclusive, equitable and sustainable for everyone, where the rights of people with disabilities are fully realized.”

This years theme for the IDPC is: “Empowering persons with disabilities and ensuring inclusiveness and equality”. 

The UN connects the IDPC with the 2030 Agenda for Sustainable Development. I really love this quote:

The 2030 Agenda, pledging to “leave no one behind,” is an ambitious plan of action of the international community towards a peaceful and prosperous world, where dignity of an individual person and equality among all is applied as the fundamental principle, cutting across the three pillars of the work of the United Nations: Development, Human Rights and Peace and Security. It is critical to ensure, in this regard, the full and equal participation of persons with disabilities in all spheres of society and create enabling environments by, for and with persons with disabilities.

The abandonment of young (and older) persons with a severe acquired brain injury (sABI): 60-80% misdiagnosis in cases of persons in a permanent vegetative state, ‘maintenance’ programmes for people with severe acquired brain injuries in nursing homes until they eventually die, a complete lack of a rehabilitation programmes in the community, a neurological rehabilitation strategy that is now seven years old and has not a chance of ever being implemented…

… leaves all those with a sABI behind.

I rest my case.

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”.