And I let out that shout again.

Pádraig did the usual routine today: getting up into the wheelchair, out onto the roof ‘garden’, a bit of food (yoghurt), the ‘ride on the bike’. He is getting less of this medicine that is supposed to lower the risk of seizures and I think he is slowly getting back to where he was before the doctors started trying out all the different types of medication.

Yesterday, the two people in charge to organise his care at home visited and we had a long conversation about how that will be organised. The preparations are getting into gear.

I let a shout out of me as did everyone there.

A friend sent me a link to a story reported in the journal.ie about a boy who suffered an acquired brain injury in an accident. He recovered, it seems, to a degree where he was able to tell his story in the Oireachtas Committee for Health. It reads like a Dejà vu of Pádraig’s experience with a distinct lack of resources, care, and therapy – to put it mildly. When is this going to blow into the faces of people who can affect change? How can a government be allowed to ignore its citizens when they most need to be supported by it? – One teenager’s ‘terrifying journey’ through Ireland’s health system after brain injury.

A few days ago, on 02 November 2014, Máirtín Ó Muilleoir, towards the end of his blog NewBelfast.com, wrote about Amhrán do Phádraig and especially the wonderful poem Marcus Mac Chongail wrote about Pádraig. For those (of us) who wouldn’t be able to follow the Irish, here is the translation provided by a fried which I first posted on 25 April 2013.

Pádraig

I have never met you
But for 9 months (ráithe= 3 months =quarter, trí ráithe=9 months I think!) now
The long silence that is coming from you
Is being filled by people who don’t stop talking about you

Kíla- playing music for you
As you were laid down in Beaumont Hospital
A chirp(?) or two from the toilet of a train (I can’t remember what exactly the story was with Aodhán except that is was very funny!)
From a friend without a ticket who is on his way to see you

Tonncheol (not sure what this means, something to do with music, maybe melody) and harmony (literally “together-music”) from the men’s choir
Singing a healing health to you from the Workman’s
Daily letters from your father’s limbo
Sieving the words, wanting to feel (understand) it all

Seosamh from the club just back from Hamburg
After seeing you
Describing it with his mouth (words)
But his eyes looking (seeking) for a different story

And the 50 brave Spartans
Who traveled in a line from coast to coast
And who swam deep into the spring sea
And your name was on everyone’s lips – your name

I went out to the finishing point of your swim
And I let a yell (shout) out of me as did everyone there
And I let out that shout again on paper for you,
That you, Pádraig, will return home safe and well.

Marcus Mac Chongail

RTÉ had a long report about Pádraig and the support he receives by his friends just two days ago, on 06 November. Rónán, another wonderful person, spent the best part of half an hour on his programme Rónán Beo@3 playing songs and poetry from the Amhrán do Phádraig, the album Pádraig’s friends put together during the summer, starting off with the Dreamboat – and then just went on and recorded a whole collection of wonderful music, songs, and poetry, for Pádraig.

Even if you (like myself;) are not that fluent in Irish, to put it mildly, you should still check it out. You’ll recognise some names and, of course, you’ll hear extracts from this wonderful album. People who say that Spanish is the Loving Tongue, like our friend Bob,  must never have heard Irish.

The show kicks off with Conamara (00:00:23 to 00:03:50); it continues with the interview with Maitíu (00:10:00), with Dreamboat playing in the background from 00:15:50; Ní Bheidh Tú Riamh leat Fhéin (You will never be on your own) starts at 00:26:00; Marcus reads out his poem starting at 00:28:55.

I must tell you, and I don’t want to sound too pathetic here (I’m sure I often do), but I am crying my eyes out listening to Rónán’s programme, to the songs, the poem, to Maitíu’s account. Reading Marcus’ poem.

How lucky Pádraig is to have such friends. They are the stuff of pure legend!

And he, Pádraig, will return home safe and well. Go bhfille tú abhaile slán, a Phádraig.

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Click here to go to the Amhrán do Phádraig website

The definite Christmas No 1!

The ideal present for all your friends and family!

Extracts from the Amhrán do Phádraig album, put together by 50 of Pádraig’s friends during the summer were played for the first time live on national radio on 06 November 2014. Listen to the beautiful interview with Maitíu O’Casaide of the Bonnymen by Rónán Beo@3 on RTÉ Raidió na Gaeltachta playing live on air extracts from the album, including Conamara, opening the programme, by Claire Hyland and Aisling Ní Laoire),  the title track Dreamboat, in the background during the interview with Maitíu, by the Dreamboaters; the poem Pádraig (by Marcus Mac Conghail); and Ní Bheidh Tú Riamh leat Fhéin (You will never be on your own), by Lauren Ní Chasaide and Fiona Pain.

Click here to go to the Amhrán do Phádraig website

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Keep winding the clock. For tomorrow will be another day.

The day that is just about to finish has been good. Pat, Maria, and I were in the room with Pádraig, chatting away, having our talks, annoying each other, being normal, with Pádraig in the middle of it all.

This morning, I rang my ‘Genossen’ and while they couldn’t give me a definite answer, they were hopeful that this coming Tuesday they will be able to tell me whether we got the bigger apartment we applied for. For the time being, things look good.

This afternoon, we had another visit from the man in charge of the carers’ service who will most likely help us to look after Pádraig on a 24 hour a day basis once Pádraig leaves the hospital, probably early in the coming year.

Things are moving ahead nicely. By this coming Tuesday, we should have a good idea whether we will get this other appartment

There has been an interesting story reported in thejournal.ie on how the ‘system’ in Ireland caters for people with Acquired Brain Injury. It’s yet another story of pure tragedy. Check it out!

Pádraig had a double physio session today with a qualified Vojta therapist. At the end, the therapist was at least as exhausted as Pádraig. I went up early to the hospital to help (as much as I could) but mostly to watch.

It is amazing how it works. He puts Pádraig on his chest with the right arm and the left foot up. He stimulates the foot and the arm begins to move. There is a point in his back that he presses and Pádraig begins to move his body.

I asked the therapist whether he himself had been at the receiving end of that kind of therapy and he said they practice on each other during tutoring sessions. He says that he jumps straight up into the air as those pressure points stimulates muscles you didn’t even knew that you had them. And that he gets ‘Muskelkater’ for days afterwards. But any back pain he might have had would completely disappear.

So Pádraig must be put under some pressure during those hour-long sessions. And what makes other people jump, gets him moving just about, just a little. But it gets him moving, makes him aware that he can move his arms, his legs, his body.

Later on today, we went out onto the roof terrace. It was ‘fresh’ but nice to be outside, breathe the air, listen to the trains in the distance (not too many today, the Deutsche Bahn is on strike, again;), hear dogs bark, feel the wind in your hair.

He had a nice vegetable-based (!) vanilla  yoghurt. Then a good old friend rang, we did the ‘Mundpflege’, the nurse positioned him nicely on his side, his heart went down to under 60 (not seen often!) and his oxygen levels better than mine.

Physically, he is getting better and stronger.

He just needs to improve a bit on his communication. And more of this Vojta stuff!

Last night ended with a long review of how our event had worked out and a dinner with some friends and colleagues. By the time I got to the hostel and had sorted everything out, like where to get the 4h28am bus to Trafalgar Square, it was almost 1h30am. I was so worked up still that I couldn’t sleep. I also had the room by myself (had been sharing the two previous nights), so there was no need to be concerned about leaving the lights on and tinkering about.

From Trafalgar Square, it was down to the Thames and as Big Ben struck 5, I was crossing the Jubilee foot bridge with a fabulous view across the river towards Big Ben and the London Eye. Coffee on the go, bus to Gatwick, EasyJet to Hamburg, S1 to Friedrichsberg and back to Pádraig.

I had been missing him and while Pat had been telling me how he was doing, that he had been coughing quite a bit, but had been very much awake with not just his right eye, but also his left one, open for very long periods, I needed to get back. The last few days felt much longer, there was so much going on, so many people, new ideas, plans, plans, how can I still believe in plans?

Today, Pádraig was sneezing, not coughing. As it was also a cold and wet day, we didn’t go out onto the roof terrace but staid in the room. He was moving his feet quite a bit today, his tongue, and he kept trying to make more controlled sounds. There are concrete plans for tomorrow, I believe, to change the catheter for one less intrusive and to lower the doses of anti-seizure medication. All good.

Tried to listen to Amhrán do Phádraig again but couldn’t anymore. Maybe it was just a dream last night that I managed to listen to the songs without having bought them?

Wouldn’t this be the ideal, most beautiful and rewarding Christmas present ever?

Our conference finished tonight and the anticlimax I always feel at days like this is taking over. Back at the hostel, I am finally listening to the tracks posted on the Dreamboat website – and what a web site it is! How beautiful, brilliant and full of energy and life the songs and poem are!

I must have been listening to it now for a dozen times or more.

It’s long after midnight. Listen.

Days merge into each other, there is no beginning, there is no end, it’s a continuum, when I let go it’s hard to tell what is real, what is important, there is no sense of space or belonging, just the need to go on, to not let go. There is no way to bring together and make sense of these days, to see or to explain what binds them together.

There is our event in London with lots of really interested and enthusiastic, but also slightly cynical with the I’ve seen all this before and I already know what’s going to happen next attitude who are in several places all at the same time on their phones, emails, social networks, and in this physical space and reality that becomes less and less important.

Combine all this with a lack of sleep, the phone call to Hamburg and the daily news about how Pádraig is doing, the occasional laissez-faire-overworked-I-can’t-do-more-than-I’m-doing-and-how-would-I-know attitude of people looking after Pádraig, the desperate hope for a miracle, the deep sadness, the realisation that the world keeps spinning ’round, man keeps making plans, God keeps smiling, while you walk down right deep deep down into the centre of the earth on Euston’s Northern Line, one set of steps after another, until you hit rock bottom, literally, then you think you are living the song you’re listening to about feeling like a rolling stone, ready to make a deal.

Pádraig had a good day today and was visibly delighted to see Maria coming over for a week to visit him. His doctor is going to decrease the medication he’s getting to lower the probability of seizures tomorrow. Once he’s sure that Pádraig’s infection is completely gone he’ll also change the catheter again and see whether a less invasive method can be used, hopefully lowering the possibility of infections.

There must have been something in the 1960s in Germany that made people think that 17 was the magic age. I’ve no idea why 17… but there is no doubt that these songs today would border on committing a criminal offence. Here is a selection. The set is worth watching as are the songs worth listening – if for no other reason as for the memories long gone or, if not because of the memories, then just out of curiosity for the unbelievable music of those years…

Udo Jürgens, 17 Jahr blondes Haar
Chris Roberts, Du kannst nicht immer 17 sein
Ivo Robin, Mit 17 fängt das Leben erst an (1961)

‘Gonzalo’ sounds mediterranean, or at least Spanish-speaking and from the Caribbean, maybe. Warm, anyway. Well, this Gonzalo was a storm which hit Europe and caused the first snow fall in the south of Germany.

Who would ever have thought last year that Pádraig would still be in hospital today? When snow starts falling? Who would ever have thought that there would be another cycle, that we would start doing again what we did last year? Looking for carers and therapists (outside of the hospital setting this time), and looking for a place to live (this time with Pádraig). If all works according to plan, there might even be another few trips to IKEA on the cards. In the “it-couldn’t-be-a-smaller-car-than-this” Picanto.

Pádraig’s doctor and then his senior doctor both talked to me about Pádraig’s slight setback of yesterday today, which coincided with yet another doctor going ahead with a scheduled procedure (changing the catheter) while the one of the former was planning to try out a less invasive method again as we had agreed. My father would have said “wenn man nicht alles selbst macht…” – you really have to do it all yourself if you want to be sure that things are done as they should. Why, why can we not did it all ourselves?

The truth is – we can’t.

So Pádraig is on an antibiotic, the first time in three and a half months. He is on a higher dose of an anti-seizure drug again (as one of the side effects of the antibiotic is an increased risk of seizure). He got a fever (which has thankfully come back down today). His heart rate went up considerably (also down again). And his oxygen levels went down to a point were he needed additional oxygen for the first time in a long time, if only for short periods.

Wenn man nicht alles selbst macht.

If you’re living near Rhode, Co. Offaly, and want your kids to have a great fun-filled Halloween afternoon, please support the Kiddies Disco organised in support of Pádraig for tomorrow afternoon by Andrea Stone and her family and friends.

They are doing an unbelievable job for someone who shared a hospital stay with their son and nephew last year. We are so happy that Arthur has fully recovered in the meantime and is back in college in his final year, and also out and about again with his fabulous band Ruaile Buaile. Listen to them playing This is the Life.

And you’re singing the songs
Thinking this is the life
And you wake up in the morning and your head feels twice the size
Where you gonna go? Where you gonna go?
Where you gonna sleep tonight?

You’re singing the songs thinking this is the life. This is the life… Thinking… Singing the song…

This coming weekend is the weekend of the Oireachtas, probably the biggest and most important date in the Irish language calendar. This year, there will be a table where Pádraig’s friends will pre-launch (and sell) the Dreamboat CD with music, songs, and poetry they recorded over long days, nights, weeks, and months for him. I haven’t heard it yet, but I’m sure it will become Christmas No. 1. It’ll take over the charts in a storm as Gonzalo took over the South of Germany. I know that because we will make it happen! We will.

Today’s German Music Tip
Heintje, Ich bau Dir ein Schloss (1969) – How could I have forgotten about Heintje? He was my mother’s superstar and I (like many other boys of my age) were just going to turn out as ‘lieb’ as he did. Watch the ‘Kleinbahn’ – it could be the one in the Westfalenpark in Dortmund that we were allowed to board on really really special occasions. It was an expensive special treat. Can you imagine?
What’s hot
Taking life by storm
What’s cold
Trying to do it by yourself
The German word/phrase/verse of the day
Mensch, haste noch alle Tassen im Schrank?

I thought they didn’t exist anymore because I had not seen them for a long term. They became famous internationally when Lenin (remember him – he Germans send him to Russia on one of their fancy trains to start a revolution) said many years ago that the first thing German would do if they planned to start a revolution in a train station was to buy one. I am talking, of course, about the Bahnsteigkarte. It doesn’t entitle you to travel anywhere, but you are allowed to enter the train station and the platforms in that train station.

Without one, you’re not allowed even to enter the station.

Where but in Germany?

Today was a good day, because Pádraig had two visitors on the one day. I am sure he was delighted to hear some other voices, and see and feel their presence. The two previous days, he had had another visitor. It really is unbelievable to see how after such a long time, his friends remain loyal to him, visit him, tell him what’s going on back in Ireland, keep him in the loop. This is really really special and something I admire immensely.

Today was a bad day, because it turned out that he has an infection which has to be treated with an antibiotic, most likely an infection of the urinary track, to do with the catheter which still has not been removed. We thought it would be and when I asked whether there had be a change of plan no-one knew. I’ll find out tomorrow, I hope. Pádraig also coughed up some green stuff which had to be suctioned orally, irritated him, and make him throw up a bit. He’s also getting an increased dose of anti-seizure medication again and a lot of water. It sounds and feels like a deja vu. Why is all this happening, again?

Checked out a new building project which my ‘Genossen’ in the ‘Genossenschaft’ are finalising. We’ll apply for one of their new apartments with a balcony and a slightly bigger layout in general. We should know in a week or two whether we were successful. Fingers crossed.