The only graduation I had ever attended was Pat’s. And that was a long time ago. Germans didn’t do Graduations when I graduated in the 80s. “Unter den Talaren steckt der Muff von tausend Jahren” was the agreed view on ceremonies dominated by gown-wearing old men.

One of Pádraig’s sisters graduated in Germany, Pádraig himself missed out on his, so today’s graduation ceremony was the first one in a long time, the first one for us as a family. It was all very exciting. Later on in the day, we went for an early dinner with the extended family. The day was full of life and celebration. It was a very happy day in a very special way for all of us. A day that proved if proof was needed that life, Pádraig’s life and our life, goes on, with happy days like this!

Straight after Pádraig’s morning session, I drove West. To Limerick. It was great to talk to my colleagues and to hear how things were going. It was also sad and, in other time, it would have been really upsetting in a way. Not so today. Anyway, the primary reason to drive West today was to go to Askeaton and Coláiste Mhuire to meet students doing a transition year project with their fabulous teacher on  – guess what?

Acquired Brain Injury.

We talked about brain injury, Pádraig’s accident, the help he received in Germany, what the situation is in Ireland, and our decision to establish An Saol to change the disgrace that is the way persons with a severe acquired brain injury are treated here – in under-resourced nursing homes (in most cases and as a matter of course).

They are thinking big the way we all should. The older we get, the more complicated things seem to get – it’s an illusion you don’t fall for when you are – or remain – young.

Next March, there will be 4,000 people assembling for the world record for the largest number of people with a helmet ever, 4,000, in one place.

It was an absolutely brilliant, motivating, energising afternoon with beautiful people determined to make the world a better place.

When I was looking, over the weekend, for a way to walk the “way”, the Camino (just the last 100km:), with Pádraig I came across this project that two friends undertook: walking the whole of the Camino, all 800km, one by foot, the other in a wheelchair. I remembered that I had read about their story some months ago and looked it up again. They are now making a film about their journey and hope to release it next year. They are also writing a book that they plan publishing in 2017, as they announced on their Facebook site.

But above all, they thank their sponsors, one being a company in Vancouver that makes the wheelchairs they used. – It’s phenomenal. Really great. Wonder if there is a company in Europe making a chair like that?

So the plans are progressing. And there’s nothing like having a good plan, to make God smile!

Playback brought back a bit of anger this morning. (In case you don’t live in Ireland or you don’t know the programme: it’s an hour of the ‘best’ of the past week’s RTÉ Radio One programming.) During the week, an old lady rang Joe (Duffy) – probably the most popular phone-in radio show in the country.

She rang Joe because she is in a nursing home. A nice nursing home. The food is ok. The people are treating her ok. But, it’s not the place where she wants to be. She wants to be at home. And she was told that she can only leave the nursing home if her daughter signs her out. Something that the daughters is not doing. This lady appeared to be mentally fine and she reassured Joe that she was physically fine too. Now, how on God’s earth can a person be held in a nursing home against her will without the owners being brought to court for false imprisonment? I felt what the Spaniards call, very aptly, deep ‘rabia’, real anger. What kind of world are we living in?

Then the day got busy. In a really good way. No carers today. None of the ones Pádraig has do Saturdays, and only one of them does one hour on a Sunday. The upside of this is that the days are not structured by the carers’ timetable, but by what suits all of us: a lengthy breakfast, easy, nice long stretches, a lovely lunch, a visit with Pádraig’s grandaunt, calling in to a cousin’s (twice removed?) confirmation family party, a film back home during dinner.

In a way, life is literally hopeless. There is only one outcome. But there are good moments. Moments that make Pádraig smile. Like when he met his grandaunts today. Maybe he remembered one of them leading the whole family up the strip in Las Vegas many years ago. Really remarkable women! Early Dreamboaters!

Pádraig meeting his grandaunts today

There are days like this when everything falls into place like the flick of a switch. When it’s not always raining…

So here we go, heroes or ghosts. One man’s mood can break another man’s soul. Or am I just too cynical for my own good, too scared to say, we’ll get there if we should. And you know, you know, it’s harder than it looks. It’s harder than it looks, but I know it’s gonna take a lot of time and a little bit of luck.

And it’s beginning to happen, it’s beginning to move. I’ve seen a reaction, yeah I’ve watched us improve. And you could say we don’t care or that we don’t believe but this is what we’ve got and there’s nowhere we’d rather be.

I ‘borrowed’ that:)

Well, it’s a song I re-discovered when Pádraig’s music therapist was singing it for him and I managed, for the first time, to understand the lyrics. She asked Pádraig whether he was sad after she sang the song to him and he said “yes”. And she said “yes, it’s kind of a sad song, even the music is kinda sad”. I was ready to jump up and shout “no, no, no! This is *not* sad! Can’t you see: It’s beginning to happen! It’s beginning to move! I’ve seen a reaction, yeah I watched us improve!”

I could see that Pádraig looked a bit sad alright but didn’t think it was because the song was sad but I’d say because he must have remembered the happy times when he was singing the song at the top of his voice with the Coronas at a concert or a festival. So don’t grow old forgetting who you are, a simple goal could get you very far. (I borrowed that line too, from the same song:)

When I looked it up on YouTube it was curious to see that the Irish version had more than five times the number of hits than the English version. Maybe I should do (with Irish) what I did when I was learning English: singing songs in Irish, reading the lyrics, then learning the songs off by heard, and slowly understanding what they are all about…

Someone once told me that in Ireland, things come in three (like in the Trinity). So today, I’m adding music to travel and communication – three things to focus on for Pádraig. Music is a bit like a smell: it instantly catapults you (back) to places and times and people – and brings back memories, the good ones, the bad ones, the sad ones and the happy ones. But this is what we’ve got and there’s nowhere we’d rather be.

The point of all of this is, I think: never, ever trade your heroes for ghosts. (Even when you’re growing old:) – Makes sense?

We were walking along the bridge and up towards the statue of Mary in Dollymount when we spotted the flowers, in November, growing amongst the stones, shielding the footpath and narrow road from the sea. In the most unusual of places for a flower to grow. Where is shouldn’t grow. Totally unexpected. (If you look closely, there was also an empty bag of chips – where it shouldn’t have been:)

Just shows that when you open your eyes and look around, not just focused on what you want to see, the most marvellous and beautiful things can appear in places where you wouldn’t expect them at all.

Tons of pictures. A set about the way to the graveyard on All Souls Day with Pádraig to visit his gran’s grave. Another set about some really engaging work today with Pádraig’s communications device, the Tobii Dynavox.

Here’s the way up to Glasnevin Graveyard from Iona.

Big Step up the footpath

There is no way to cross this road in a wheelchair without heavy lifting

Almost impossible to get up and down the footpath

Doesn’t look that insurmountable but it’s much higher than it looks

This is what Mr Zerban on WDR 2 German Radio called a “Marterstrecke”

It’s a ramp on a footpath!!!

Ramps on the footpath – why???

It’s maybe a 30 minute walk. But it’s got everything from near to unsurmountable really high up footpath’s that cannot be reached without heavy lifting to what amounts to high ramps crossing the footpath. It’s unbelievable. Add to that the fact that today was bin day and many of the bins were blocking the way for a wheelchair and you get the picture. It’s really hard, and at times almost impossible. to navigate Pádraig’s wheelchair up to and into the graveyard. If you were in a wheelchair on your own, it would definitely not be possible.

Next set of pictures is from the incredibly engaging work Pádraig did today with a speech and language therapist (SLT). So far, the options on his Tobii Dynavox were all geared to tell people about what he would like to drink or eat, or how he felt. Today it was all about asking questions and getting others to tell him about how they are doing.

Opening and Closing Questions, as well as about the day’s schedule

How is: work/study/everybody?

What’s the plan?

Closing questions

It’ll all be refined a bit more – but this was so interesting to put together that Pádraig was fully engaged for two hours. Actually, it was him who put all this together – yes, prompted by the SLT (and by us a bit), but he was telling us what he wanted to have in there and what not, which pictures he felt worked best and which not. It was a full two hours that he was fully engaged, an absolutely exhausting enterprise but so important to him that he really gave all he had.

Next item we need to talk about is travel and exploring:)

What was that again about concentrating on the important stuff? It really does work!

Here’s good auld Brendan Behan trying to chat up a girl on the Royal Canal, in the Dublin evening sun of a lovely All Saints evening.

Though she isn’t paying him much attention, it’s clear that the whole setup is set up this way to show that it’s talk that brings us together, that allows us to be social, to share our experiences, lives, convictions, opinions with each other.

I know few people who have opinions as strong as Pádraig. And the more I’ve become aware over the past weeks of his awareness, the more I’ve felt the imaginary wall that surrounds him and prevents him from sharing his opinions, his ideas, his wishes, his views, his feelings… with us.

And when we asked him what was the most difficult part of his journey so far, he confirmed that not being able to talk, to communicate, was the hardest part of the journey.

So here it is: we have to get Pádraig traveling and exploring again; and we have to do anything we can to allow him to ‘talk’ to us again, in whatever way and by whatever means.

It’s good and important to set clear priorities. Otherwise the important stuff gets lost amongst the noise of every=day life. Right?

Bank Holiday Monday. A quiet day. Got a visit from a friend who has a car converted for wheelchair use and we tried it out with Pádraig and his wheelchair. It’s just that little bit bigger than the Doblo that changed his life giving him great mobility.

One evening, I’ll write about what can happen to your job if you go on carer’s leave – and you don’t have to be in the cut-throat high tech business to experience that. I’m thinking of work because last Saturday, I received a phone call from a former PhD student of mine who had had his viva and will soon graduate with a PhD, expressing his thanks that I had believed in him and his abilities to get through those tough years of study. I had handed over his supervision to a colleague and together they managed to bring that student over the line. It was like a blast from the past. Nice to hear about his success, touched to hear about research and academic life…

I’m up late. From tomorrow, life will be different.

You know when you fundraise, you come up with an event or something you’re going to do. Like running an insanely long distance, or sky diving strapped to someone else, or climbing a mountain, or cycling across a desert… Then you tell all your family and friends that this is what you’re going to do, and ask them to support your fundraising efforts by donating money either directly or online. Finally, when the big day arrives you do this extraordinary thing, hoping that all will go the way you have planned it…

I think today was the first time ever, that I heard of someone do what he himself felt was almost impossible for him to achieve and then started a fundraising campaign:)  But it’s true. One of Pádraig’s really good friends today ran the Dublin City Marathon for the very first time. He crossed the finishing line within quite a respectable time – something he did not believe he could achieve. But he did. So now he is starting his fundraising campaign for An Saol.

Check out his fundraising page at bit.ly/AodhanMarathon.

I’m not quite sure why he thought he might not have been able to cross the finishing line today – when he is one of those people who never give up and who do the ‘impossible’ to achieve what they’re aiming for. He is a Dreamboater, someone who believes in mind over matter.sss

I had a very sad day today for some reason. But sure, I’ll get over it. Tomorrow will be another day: bright, friendly, forward-looking, exciting…