It was a breathtaking match. We were matching each goal and then, with just 3 minutes 16 seconds to go, we took the lead with 3:2. Then, with 55.2 seconds to go, they caught up. 3:3. One of our players was sent off in over time. And within a minute the OAR scored and won the gold medal. – If you are like myself, you’re now going to google OAR – which country is that? Only to find out that it is not a country at all but Olympic Athletes from Russia. Isn’t that really, incredibly funny – all the athletes came from Russia, but Russia did not win!? I mean, come on….?

But we didn’t allow us to get depressed and decided to have some fun. We went out for Sunday lunch. To Ikea. To Ikea?

You’re right. That isn’t really that much fun at all at all. But going out, watching so many families moving through this gigantic furniture superstore, was brilliant. The food in the ‘restaurant’ was really cheap and, mostly, not too bad. The ‘Dime Cake’ could even be recommended. Pádraig took about a minute to finish it up. Nuts and all.

And in IKEA, for the first time, someone told Pádraig she had been following this blog; someone we had never met, someone we didn’t know. She said that she felt she knew us really well and that she was delighted to see all the progress Pádraig had made, and how he was out and about. Even in Ikea!

If that isn’t encouragement!

Even if we lost against the OAR.

While I was out with our Spanish friends in Glendalough this afternoon, Pádraig did what we all had been waiting for for some time now. Something simple, in one way, but pretty spectacular in another.

Someone had brought in some chocolates (yes, I know, it’s lent:). They decided to put one piece of this really nice chocolate near his fingers on a table standing in front of him and helped him a bit to pick it up. Here comes the “first”: with the piece of chocolate in his fingers, he lifted up his arm and his hands, opened his mouth and put the chocolate in his mouth. Boom!

This ever increasing level of control and independency also includes making people laugh, smiling at people, and spelling out jokes on people. You should have seen him when the really colourful and larger than life mother of one of his friends came in yesterday to leave some food she had prepared for him, gave him a big hug and a huge kiss on his cheek while asking for ‘forgiveness’ because she had forgotten to put on her usual strikingly red lipstick that morning! At least, she said, no-one had to wipe off the big red mark her kiss would have left on his cheek! Even when disaster strikes, there is always a positive aspect to it:) – And he was, together with all of us in the room, laughing his head off. What must have made him even happier than that remark was surely the feeling that he could share his happiness with us. Which is (a good bit of) what life is all about!

You have to look twice. But then you’ll see that this is the funniest comb you’ve ever seen in your life – sourced by one of Pádraig’s therapists.

It does the job. Pádraig can hold it in his hand and he can comb himself, with a little help. Sometimes, the most strangely looking things can have the most unexpected effects.

There’s nothing like a good plan. Of course, it will change the minute you’ll be trying to implement and follow it. But what the heck? We’d be lost without them. The idea to put some structure into our lives, some goals into our work, and belief that there is a way to achieve them that we can map out.

Part of our plan for Pádraig is now to work with him on spelling – though ‘work’ is not what it should be. It should be fun, it should allow more participation and inclusion.

Today, he shared with us the names of the two favourite songs by two of his favourite bands. We even managed to find them on youtube and played them for him.

I got word today that the lift into the FABrík got fixed! Isn’t that nice of the landlord to get it completely reset and to get a new shutter motor installed just so that we can bring Pádraig into that space that will soon be converted into the most amazing day centre on the planed: designed and run by Dreamboaters!

Can you imagine a newsreader saying: “There are no news tonight. And now the weather.”? Not really. And yet, my best friend’s father remembered a day where exactly this happened.

Was the newsreader right? Was there, indeed, a day when nothing happened? vI feel that there are days when what moves me is so important that anything else disappears into the background. Our really good friends from Spain arrived today to visit for a few days – an absolute highlight! Pádraig had an excellent hour of music therapy.This morning, we did exercises we hadn’t done in a good while. Yet the one outstanding hour was in the presence of a good friend who had died. Another person, the third since before Christmas, who was very close to us and passed away.

I’ll leave you for now and wish us a restful and peaceful night!

Tuesday is swimming day. One of our favourite days of the week. We can’t take any pictures, picture-taking is not allowed in most Irish pools when other people are around. But if we could, you’d see Pádraig kicking his legs moving through the pool on his back; holding on to the side bar and pushing himself out before pulling him back in; walking across the pool moving his weight from one side to the other and stretching both of his legs as he’s doing so. Today was the first time he did all of this with more confidence, determination and verve.

Earlier on today, one of us asked Pádraig which word he would use to describe them. He used his new letter sections and his bleeper to give us an “s”. Followed by an “m”. There were some laughters and a smile on Pádraig’s face (or was it a smirk?).

“Now, Pádraig, this could be “smart”, or “small”, or, who knows, “smelly” – or could you think of another descriptor?

“Give us the next letter, Pádraig!” And he gave us an “a” which reduced the options to just two: smart or small. “Which one is it, Pádraig?” And guess what? – He went for “small” causing laughter all around!!!

I think I cannot even get close to imagining how empowering that moment must have been for Pádraig, making a whole group of people around him, family, friends, carers, make laugh! Using his very limited means of communication and his incredible, loving sense of humour! He must have felt so proud!

There should be a job coming up at Ireland’s Herald newspaper any day now. I mean, do they check the layout before they send it to press? Here is page 9 of today’s edition. You couldn’t make it up.

I spent the morning with a 5-person film crew, two cameras and a drone in Creation House / FABrík for the first day of filming the An Saol documentary. What an exciting morning! It was brilliant to see the enthusiasm of the crew about the project and the premises. It really re-enforced, if that was necessary, the decision to go with what is a magnificent building – even if it requires some refurbishment…

Unfortunately, the lift did not work this morning (but the owners will get that fixed) which meant that on this occasion Pádraig could not come along. I’ve told him so often about the place and, to date, he hasn’t seen it. Although, with a bit of luck, the lift will be fixed this week and we’ll be able to have a ‘walk-around’.

Pádraig did come with us to our friend’s Louise one month’s mind. The DCU inter-face centre, where the mass was held, was too small to hold the hundreds of people attending celebrating Louise’s life and giving thanks for the gift of her friendship. It’s hard to believe that it is already a month since her death.

With a bit of luck we will be getting a cut of today’s filming at the FABrík very soon. Can’t wait to see it, can’t wait to share it.

Finally, have a look at this.

Seventy-one dead.” “And still no arrests?” “How come?”

Three billboards outside Grenfell Towers in London — where a massive fire ripped through a 24-story block of public housing flats on June 14, killing 71 people — demand justice. It this the start of a movement? Three billboards…?

Pablo Picasso once said: The meaning of life is to find your gift. The purpose of life is to give it away.

I’m following this programme that is supposed to help me prepare for the Hamburg Marathon. Today, that programme told me to run 16km. Before you ask: yes, I did make it back home. But just about. And it wasn’t so bad that I asked myself why on earth I was doing this. While I was ‘running’ I had to come up with something to look forward to. Like a shower and a rest. It worked.

I’m doing this running thing to keep fit, to get out, and to clear up my mind. When I’m struggling for air and my legs switch to automatic my mind goes blank. It’s a break from the questions that bother me. From the quest for meaning and purpose.

Pádraig went out this afternoon to visit his grandaunts. The idea of him going to see them in the nursing home, in his wheelchair, is strange. But they are delighted each time he comes to see them. They wonder how he is doing, how he is improving. And I think he likes the idea of the visits that really makes their day, bringing happiness to them. – Think about it: isn’t that another first? Something nobody had ever expected to happen? That Pádraig would go to visit his 90 year-old grandaunts, bringing them happiness and making their day? That his fight is not just for survival but a meaning and purpose, and not just for him but for so many others? Finding his gift and giving it away?

We’d like to finish off with a new single. It’s going to be out in two weeks time on Threshold Records and it’s a song written by Justin called Question, says  Ray Thomas of the Moody Blues. Check out the incredible moustache and the most incredible music. The year was 1970!

Why do we never get an answer
When we’re knocking at the door
With a thousand million questions
About hate and death and war?

When we stop and look around us
There is nothing that we need.
In a world of persecution that is burning in its greed.

I thought more about the “Three Billboards…”. Yes. – At the core, it’s not just about outrage about something not happening. It’s about outrage at this CONSENSUS that things should just be left as they are. Don’t rock the boat. Don’t annoy anyone. Be on the side of the ‘majority’, of ‘society’, of the ‘establishment’. Sure, what difference will your ‘rebellion’ make anyways? It’ll just cause problems for you and won’t resolve anything.

The point is that it doesn’t really matter whether the ‘rebellion’, the billboards, will make a difference.

What matters is that we keep “knocking at the door with a thousand million questions about hate and death and war” and that we do rebel — and that we include people no matter how their abilities might be limited; that we provide people with the help they need no matter how helpless they seem to be; that we don’t leave anybody lying in bed for the rest of their lives staring at the ceiling just because someone has decided that they don’t offer a ‘return on investment’.

In the well-meant but very non-PC words of Mildred Hayes, the lead actress in “Three Billboards…”: This didn’t put an end to shit, you fucking retard; this is just the fucking start. Why don’t you put that on your Good Morning Missouri fucking wake up broadcast, bitch?

Pádraig went out for a nearly 2 hour walk to the Botanic Gardens with two people nearly his age, enjoying the ‘warm’ weather. 10o Celsius! Unbelievable. It makes a huge difference to be able again to go out without fear of catching a cold! And being in the company of people of your age who share your interests, your sense of humour, and your taste of stuff, I am sure.

The central theme of “Three Billboards…” is outrage and what to do with it. Today, I heard an ad on the radio by the Mother and Baby Homes Commission of Investigation set up by the Irish Government asking people to come forward and report to it what they know about those home that operated, apparently, up to 1998.

Could you imagine, for a moment, what would happen if someone found the corpse of a baby buried in my back garden?

Well, in Tuam, Co. Galway, the Bon Secours Mother and Baby Home was a maternity home for unmarried mothers and their babies. Here are some details:

In 2012, the Health Service Executive raised concerns that up to 1,000 children had been sent from the Home for illegal adoptions in the United States, without their mothers’ consent. In 2014, a local amateur historian, Catherine Corless, published an article documenting the deaths of 796 babies and toddlers at the Home during its decades of operation. Excavations carried out between November 2016 and February 2017 that had been ordered by the Commission of Investigation found a “significant” quantity of human remains, aged from 35 foetal weeks to two to three years, interred in “a vault with twenty chambers”. A later report by an Expert Technical Group, commissioned by the Department of Children and Youth Affairs, confirmed that the vault was a sewage tank.

And the government agency investigating this – *not* the police – is looking for witnesses in a radio ad.

We need billboards, many more than just three, asking why the police is not investigating these horrific crimes, bringing to justice those who know about these crimes but conceal the truth.

Pádraig had a good, quiet day today. Some exercises. A short walk around the block. Some good food, smoothies, and other drinks. No medication. No PRG-food or liquids. No food supplements. I have to remind myself from time to time how amazing this is. Two days ago the community dietitian paid her 6-monthly visit to him. One of the things she does is to weigh him. Always a tense moment for everyone.

Because there was this fear that, apart from threatening aspiration, pneumonia and death highlighted by some therapists in the past, that he might be loosing weight not receiving any PEG food or food supplements. On this occasion it turned out that Pádraig had gained 4 kilos. No-one could believe it. 4 kilos! Incredible!