It’s a mild night in Dublin. I’ve the window open just enough to let a bit of fresh air in and to hear the rain running down a broken plastic pipe somewhere not too far away. I have decided to go to bed earlier and to get a bit more sleep.

What that means is: feeling less tired during the day, clearly and not surprisingly. It also means: I don’t fall asleep the minute my head hits the pillow; and I have dreams so vivid and clear I find it hard to tell whether something happened or whether something was, well, just a dream.

So, in a way, going to sleep is like getting ready for your dreams. Listening to the rain outside and the water hitting that broken pipe. It feels like as if the world could be at peace, this moment. Tonight.

Following a waiting time of nine months, Pádraig today saw two OTs in the CRC’s assisted technology department for about an hour. They were amazed by his progress an we tested a new switch to be used for his Tobii Dynavox. It was a good session – though, and with all due respect, really, on OT would have sufficed and having to wait nine month for this is, without any shadow of a doubt, just unreal.

But rather than dwelling on this, I’ll listen to the rain outside, get ready for my dreams, and believe in a world at peace.

PS: If Kevin should read this – I just corrected ‘the world at piece’ and changed it to ‘the world at peace’. Makes more sense:)

Peace.

Listen to this to start your day and you’ll be alright! Believe me, it works. It turns problems into some insignificant comical stuff. It makes you dance. It makes you happy. And you’ll pretend with Van the Man to be a black singer with a brilliantly deep, dark voice. You’ll find it easier with the daily grind…

Given the pretty dire situation in relation to Pádraig’s care, therapy (except for his excellent, private, physio) and rehabilitation, we have been looking for caring people, professionals with a heart and ambition, who could complement Pádraig’s current rehabilitation programme. We have started to look at the possibility of making a room available to them (not necessarily in our home:) at a cost that would make it feasible for them to move to Dublin.

Because we know that Pádraig’s situation is far from being unique, we hope that once we have identified the right professionals they might be able to move on to An Saol’s Day Centre once that opens. In that case, we would already have worked together and feel confident that we are in the right company.

Tuesday is swimming day, except for today. Both the PA who accompanies us and myself have not recovered enough from the cold/flu to dip into the water. Though these days are probably going to be the last nice days of the autumn in Dublin, pretty mild, sunny, quiet and just lovely, I haven’t been out even for a short walk. Feeling cold and miserable. (Which reminds me of how things are going while trying to see the bright side of life, the bright side of the road.)

I am kind of keeping my distance from Pádraig so as not to pass on my germs to him. It’s a strange feeling to be less involved and I miss it (being involved) and being with him.

Don’t know about you. But when I’m sick, I so much more appreciate my health that I take for granted most of the time. I also feel decades older, pretty useless, and a bit pessimistic. I find it hard to get over this self-pity and keep going. And I’m just talking about a common cold, maybe a bit of a flu, but nothing serious, really.

When all the puzzles look like they fit… there’ll be days like this. There will be!

Don’t spend too much time with one particular person.

This apparently is what at least one community therapist was told by their management.

I just heard this recently, first hand, and I wasn’t surprised. While the blandness of the statement is amazing, it makes perfect sense when you think about it for a minute. There aren’t enough therapists in the community and the ones that are there are generalists, trying to deal with dozens of different conditions. So any attempt to get more time from them for a particular person, even if this person is in desperate need of therapy, will fail. Must fail. In this system.

The lesson: don’t waste your time trying.

Instead: pool your forces of whatever type (political, professional, financial, whatever) to build an alternative. This effort will pay off and will not go wasted. Whoever is out there and wants to help, can help our efforts to build these alternatives, let me know.

Today, Pádraig’s physio called in sick. His PA wasn’t great but didn’t call in sick. And I spent, again, most of the day lying down.

Tomorrow will be another, a better day!

PS: Follow that advice – do as little as possible, ‘fighting’ the system or whatever else. Instead do as much as possible to really make a difference where you can by working on positive change. Sailing down the stream with the Dreamboaters. Working the sails. Leaving ‘systems’ behind on the shore. Soon, we won’t even remember them.

We swapped roles and experiences today (kind of).

Pádraig had an absolutely brilliant day out and about the Royal Canal, the railway bridge in Drumcondra and Quinn’s pub, last stop before Croke Park, pre-match. Later on he was listening to the highlight of this year’s sporting calendar, the (gaelic) football final, sitting out in the garden, so he could hear it live (the wind carried the sound from the stadium) and on the wireless. He got a Dublin flag from a street trader and had a couple of ice creams sitting outside in the warm-ish September afternoon, enjoying a thrilling match.

In turn, I had gone back to bed after a late breakfast and slept it all out until late afternoon, trying to get over a cold or a flu or whatever it was that made me feel ancient and useless and without even a bit of energy. What made it all worse was that all the time I felt that I cannot really afford to get a flu or to stay in bed. It’s a frightening thought. A sad one too.

I’m sure, I’ll be over the worst tomorrow.

You must know “Despacito“. The song has almost 4 billion views on youtube.

The other day one of Pádraig’s friends said: “Have you listened to the lyrics?”, with an undertone of incredulity that such an overt, well, sensual?, song made it to Number 1 around the world. It’s a great song, full of rhythm, and, because it’s in Spanish, hard to understand for most of us.  I looked it up on the web.

Despacito
Quiero desnudarte a besos despacito
Firmo en las paredes de tu laberinto
Y hacer de tu cuerpo todo un manuscrito (sube, sube, sube)
(Sube, sube)
Quiero ver bailar tu pelo
Quiero ser tu ritmo
Que le enseñes a mi boca
Tus lugares favoritos (favoritos, favoritos baby)

Déjame sobrepasar tus zonas de peligro
Hasta provocar tus gritos
Y que olvides tu apellido (Diridiri, dirididi Daddy)

(In case you missed your Spanish classes in school, you might want to consult google translate or search for the English version:).

It’s pretty clear what the song is all about, though I was surprised that someone would find it a little too explicit. Maybe I’m too old?

I remember what happened when, many years ago, I was driving through Spain in an old VW Beatle and proudly played a song that had been Number 1 in Germany for many months, to my Spanish and Irish friends. It was Bobby Brown by Frank Zappa. My Spanish friends loved the song, my Irish friends couldn’t stop giggling. Eventually, I decided to swap tapes. Now, to my excuse, these were times when PCs did not exist, neither did the internet or the web (to check the lyrics and get them translated:).

Stuff that sounds good, maybe great, or even absolutely amazing can turn out slightly different once you start understanding it, or – if you don’t understand it yourself – once you share it with people who do.

The most amazing event in the most amazing venue organised by the most amazing people, tonight brought together people affected by suicide, acquired brain injury and both. For the first time ever in Ireland.

To me, it was like the beginning of a new era, a new movement that would shake things up. And it came from people who had decided that something needed to be done and they did it. That simple. There were no committees, no big inter-organisational meetings, no board, no signed agreements. They just did what they felt needed to be done. It was like a breadth of really really fresh air.

Thank you to the Breslin Family and their Friends who organised this incredible night in support of Pieta House, ABI Ireland, and the An Saol Foundation! Thank you to all who joined us tonight and made this a night to remember!

Thursdays are fun days when Pádraig’s friends come to the house to share with him what is going on in their lives, to have some fun, and packets of biscuits.

So maybe, it wasn’t such a bad idea after all, to service his ceiling hoist – a service that included the super-weight test: having a box full of really heavy weights, making up more than 140kg, being lifted up by the hoist.

Today, the kitchen was packed with his friends for almost four hours, a time full of laughter, jokes, and biscuit eating. You could see, hear and feel the delight of these hours.These were the dreamboaters, the future, the energy and the tomorrow. All in safe hands.

Water finds a way.

So will we.

(Downpipes on a house in Parnell Square the other day when one of the worst showered ever came down on the city.)

If it’s worthwhile, do it slowly; simple; and in style.

This is what Mr Zapp’s grandfather told his grandson. And this is what Mr Zapp and his wife have been doing over the past 17 years as they have been traveling the world in a 90 year old car. Mr Zapp says, there is no way you could drive that car at speed. The mechanics of the car are so simple you could get it fixed literally anywhere in the world; and, he said, look at it – could you imagine anything more stylish than this beautiful old car? – They had four kids in the process who are now traveling with them and who they school as they travel along.

We haven’t been traveling the world.

But there is an elegance and a style, a very personal ‘stamp’ Pádraig has been putting on his recovery. His very slow recovery. In a simple, uncomplicated, straight forward way. Yesterday, he stood up, with a bit of help, and held his head up high, without any help. Even though he managed to do this for only a few seconds. Today, when we went swimming, he stood up high and tall in the water, holding on to the side bar of the pool with his hands, and pushing his heels firmly down into the bottom of the pool – and he did this not just once but three times. Elegantly, slowly, and simply just standing up.

Zapp!

We finally chose to walk like giants
and hold the world in arms grown strong with love.

A friend sent this image to me this afternoon. I find it hard to think of anything more beautiful tonight: that we hold the world in arms grown strong with love.

And that is something we will never forget.

This moment.