Boston and Cape Cod – Pádraig is getting ready to visit.

I don’t know what it’ll be like. Nobody knows. When I close my eyes and think back, i remember that evening in Sanya, I had given a Skyfall-themed presentation, when I got the phone call from home. When we all frantically made arrangements to get to Cape Cod, when US customs officials allowed me to enter the US without a return ticket, and the ICU in Cape Cod Hospital told me to ring them anytime I wanted, day or night. When things were really bad.

Pádraig won’t be going back there walking and talking. But he’ll be able to see where the accident happened. He’ll be able to go to the hospital and see and hear and get to know the place where he spent a bit more than two weeks. Always and literally. On the edge.

Now, we got accommodation organised in Boston for one night only. Because on Tuesday, after our visit to the Attorney General’s office, we’ll drive to Hyannis. On Wednesday, we’ll start our walk at 9 am from Brewster Police Station to the place where the accident happened,

And then, we’ll share one of those famous Cape Cod lobster rolls.

He didn’t stay the night – not because the 300 tent spaces had been sold out (they had) but because we decided that we’d keep something for next year. This was Rath Cairn, the one and only Gaeltacht in the East of Ireland, in County Meath. And Pádraig had got a day ticket for his birthday.

As far as summer festivals in Ireland go, it couldn’t have been more authentic. The field was mucky, the skies were grey, the rain was falling, everything and everybody was cold and wet, but: full of good spirit, good humour, enjoying the craic and the music.

That’s life.

And next year, Pádraig will bring a tent.

It’s good night and ’til tomorrow for now. Tired and exhausted.

There are times when I have to look up an Englsih word. Even after decades of living in Ireland.

“Abominable” is one of these words I had to look up when, today, I heard someone saying they could not think of another word when describing a certain person’s behaviour.

“Loathsome, detestable, hateful, odious, obnoxious, despicable, contemptible, damnable, cursed, accursed, diabolical, more…” were the synonyms Google came up with. Pretty strong language.

I spent a little bit of time thinking about the person using this word and about the person being described by it. I don’t think either of them are happy in themselves. Otherwise they wouldn’t provoke or have such a strong reaction to what the other person did.

Nobody (I know of) can be happy all the time. But I don’t think anybody should ever be or being perceived to be abominable. I promised myself today that if I felt somebody was (or that I was about to:), that I would stop, that I would rewind, and that I would try to be kind. Because when it gets to that point, kindness is what both need.

Pádraig had a good day today with a catch up session of speech and language therapy, the first one back home after Pforzheim, and an hour-long massage by one of our incredibly generous and friendly neighbours. It was such a pity that after this relaxing and soothing hour he had to get up for his lunch. Later on in the afternoon he had his first music therapy session after a month-long break.

Listening to the music and interaction going on in our living room from the outside as I walked by, I could only capture a tiny part of the kindness and magic that was shared inside, I am sure.

A call from the HSE, a brilliant swimming session, and yet another birthday party (this time not for Pádraig but for his aunt:) made today a good day. I am so exhausted from all the action that I am lying down already, struggling to keep my eyes open.

Although nothing has changed materially (yet), I now have been told that the first tranche of money is definitely on the way and should be transferred to An Saol this week, the service agreement will also be signed and a copy returned to us. It almost sounds too good to be true.

What was really good today and is certainly true is Pádraig’s incredible progress in the pool. Movements have become much faster, Pádraig is really moving himself across the pool, walking. And today he stood by himself except for me holding his head.

Are things lining up. Is there, almost, real change in the air?

It’s one of those evenings… not enough energy – I’ll be back tomorrow.

Everybody feels immediate change. When Pádraig’s accident happened, my world was turned upside down in no time at all. Boom. It was such a shock that I probably won’t recover from it anytime soon.

But what about slow change? What about stuff that happens over a long period of time, maybe over years? Change that happens so slowly that I mightn’t even notice it?

Like age.

Some years ago, I had a meeting in one of these super cool US multinationals with super cool people everywhere. Guess what? I felt super cool myself. Didn’t take long And then, the meeting was over and we went down the stairs together, passing by a huge glass window letting us look into the super cool gym. A few steps further down and a huge mirror, reflecting the staircase and, of course, the super cool people just walking down the steps. Only that, in the middle of them, there was this rather un-cool, ‘slightly’ older looking man. I did not look at all in that mirror as I looked liked in my mind.

Or like (bad) habits.

I used to smoke. And I liked it. To tell you the truth, I still like the idea of smoking. Anyhow, when the time came, I gave it up. Easy. Only that for quite some time, I went into the same shop where I used to buy the cigarettes at the same time and had to find something to buy. On autopilot, I just walked into this shop to buy cigarettes I didn’t want to buy anymore, never mind smoke. It had been my routine to walk into this shop every morning for a long time and to change that routine was far more difficult than I had thought.

In essence: you can be doing something or you can be someone that you don’t want to do or that you don’t want to be. And because you have slowly slipped into this over a long time, you might be old, or live unhealthy in whatever way, or do stuff on autopilot you wouldn’t do if you reflected properly on it — you might not even notice.

So when I hear health professionals telling me, what seems to me to be, really un-reasonable things and in an unreasonable way, they do this most likely not because they are odd, but because they don’t realise anymore that what they are saying does not make sense. They have moved slowly into a space that is very re-assuring and calm — with little or no space left for ambition, enthusiasm and drive fpr change.

We will need to give them new reference points. We need to tell them that the king has no clothes on.

It was the most brilliant reunion with friends he hadn’t seen for some time and in a place where he was a regular but hadn’t been in five years.

The man who had booked the place sadly couldn’t join Pádraig and his friends today. He is himself in hospital. So when the party in the Conradh was nearing its end, Pádraig and us left. We had an after-party in James’ hospital. One to remember. Never to forget.

A big thank you to all of Pádraig’s really good friends who contributed to this evening!

Paella. Tortilla. Pinchos. Juan.

He spent hours today creating the most authentic, beautiful, tasty (sorry, I tried it:), and wholesome dishes, listening to Buena Vista Social Club, converting our kitchen into a very special place. For a few hours, we were all somewhere very different. I am curious to hear what Pádraig’s friend will think of the food tomorrow evening. They;ll get together in their old haunt, the Club in the Conradh on Harcourt St at 5pm for a couple of hours to celebrate (each-feiern) his birthday.

Today the funding saga continued and progressed. At a meeting at the HSE headquarters I was re-assured that the first tranche of funding will be transferred into the An Saol accounts really soon.

There was also great interest in the Creation House factory to a point where I was wondering whether we should make one last effort to get this over the line…

In any case, there is great optimism and there are great expectations – which I all share.Though: I’ll believe it all once the money is in the bank

In the meantime, Pádraig will keep celebrating and will live his life as best as possible.

There is this brilliant cover by Johnny Cash of Nick Cave’s song Mercy Seat, a friend told me today. Listen to it when you get home. I looked up the lyrics (just in case I couldn’t follow when listening) and thought it’s a song about someone innocent about to be executed.

Then I was listening to the song…

And the mercy seat is waiting
And I think my head is burning
And in a way I’m yearning
To be done with all this measuring of proof
An eye for an eye
And a tooth for a tooth
And anyway I told the truth
And I’m not afraid to die.

(That last line changes to “And I’m afraid I told a lie” in the last line of the song.)

… and I thought: in a more abstract way, this song is about life. It’s like the passion. And the end is about mercy. Whether truth or lie – what does it matter in the end? Fighting eye for an eye, a tooth for a tooth, measuring of proof – what does it matter?

Following last night’s venture into the wild of Patti’s and Nick’s powerful embrace, we had a lie in this morning. I didn’t spend much time with Pádraig but went to a meeting with the local HSE and then on to Limerick for three meetings, only one of which worked out as it just overshot its allocated time by miles and I wasn’t determined enough to just finish it. It was a bit of a disaster. Concocted by moi. Not good.

Though there are two bits of good news: we will have control over Pádraig’s budget soon (probably within two months) which will make organising his care etc. hopefully much more straight forward; AND: our local HSE area has now received the first tranche of funding for the An Saol Foundation pilot project and is, apparently, ready to sign the agreement and pass that funding on to An Saol. It has not happened yet – but it becomes increasingly more likely that it really will happen!

But I believe in love. Keep your candles burning.