Insanity is doing the same thing over and over again and expecting different results, is what Einstein once said. He obviously was not talking about practice.

Today was practice day. The speech therapist gave me another hands-on session in how to switch Pádraig to the speech valve in the morning. I must be close to graduation on this one, but not quite yet there. Neither Pádraig nor myself are anywhere near as nervous as we used to be some weeks ago. The suctioning went fine as did the switch over. When the therapist asked him to say ‘Ahhh’, he reacted quite well. When she asked him to put his lips out and to say ‘oooohhh’ there was a bit less of a reaction, until she asked him to pretend he was giving a kiss (like he does to Pat, I added), which is when a big smile appeared on his face (still no ‘ooohhh’, though:). After just a short lunch break, we had another double session with the physio and the OT who showed me how to life Pádraig out of the bed and into the wheelchair using a special lift. Another hour on the speech valve. Back into bed. Off on the MOTOMed-viva2 for about three quarters of an hour.

A long very active day after which I feel exhausted, I can only imagine how intense the day must have been for Pádraig. And he was doing so well. He started off in the morning with just a little additional oxygen, by the time he was finished on the ‘bike’ in the evening, there was no more need for it. This just shows you how much he gains from sitting out, using the speech valve, and ‘cycling’.

Today’s (German) Music Tip
Die Bandbreite, Was ist los in diesem Land (2010). A new kind of a protest song from a group I hadn’t heard of before. Even if you mightn’t agree with all the sing about, even if it is quite a bit controversial, it makes you think. And that is always good.
What’s hot
Exercise
What’s cold
Complacency
The German word/phrase/verse of the day
Übung macht den Meister

‘Tilt’ and ‘Table’ are two concepts you wouldn’t think go together well. If you want a table, you want it sturdy and stable, no tilt. Except, that is, if you got to lie on top of the table, get strapped in and then get tilted. Up.

I got a phone call this morning from one of Pádraig’s physios asking could we come in at 13:30 because he was going to get a surprise double session today. So we went early. When we walked into the room, he was standing! Ok, he had a bit of help but he was standing. Almost vertically. Can you imaging this? It has almost been a year that all of Pádraig’s 2.04m (that is 6’7″ for those still living in the ‘imperial’ world) had been in an almost vertical position. One of the therapists explained the magnitude of what was going on to Pádraig by saying he had just run a marathon. So they gave him a rest, lowered him down a little, and, as soon as he had ‘recovered’ a bit, had a second go. In the end, it hadn’t just been a marathon, but an ironman.

Get ready for the O’Malley Clan Table Quiz tomorrow evening at 9pm in Crokers, Murroe, Co. Limerick. Already 128 tickets have been taken up, according to the latest news, an incredible amount of people will join the O’Malleys tomorrow night in Murroe. Pádraig’s grandmother was Brenda O’Malley O’Byrne and she had many relations in Murroe and the surrounding areas. Just around 1,000 people are living in Murroe today, in a village founded in the 1830s by the Barrington family, who lived in the now Glenstal Abbey monastery and boarding school from 1926. It is really extraordinary what the O’Malleys are doing and what they are putting together for the night.

Here is a quick report by Raphael on yesterday’s run through Dublin’s tropical temperatures!

Hi Reinhard,
Raphael here. Just reporting back to say the legal eagles’ run went very well this evening. It was hot, hot, hot! 25degrees on the quays of the Liffey at 6 in the evening is certainly not typical Dublin weather! But no one was complaining at all. The sunshine just added another perfect dimension to the warmth generated by lots of lovely youngsters (and this Not so young “reporter/runner!) running their hearts out on a summers evening for a wonderful cause.
When chatting afterwards  to some of our summer interns who had joined us for the run, I discovered that they know some of the brave souls who conquered the Irish coastline on the Snámh Phádraig  a little while ago. So, the circles of Padraig’s wonderful friends just keep on interweaving, don’t they? There were certainly very good vibes making their way to Padraig from the Docklands of Dublin tonight. And just an amusing postscript: This runner had thought she was going to be a walker tonight, but having cut the ribbon at the start, she looked in vain for a walking companion….there was none!! Everyone was running..so she had to follow suit and run too!! – Totally unprepared for running (I thought I’d given up running a few years ago!) but I found my wings ok (or maybe an amused Angel pinned a pair of wings to my back for the occasion?) 🙂
Best and warmest wishes as always, Raphael

Get involved in #SongForPádraig / #AmhrándoPhádraig

Today’s (German) Music Tip
Udo Lindenberg, Nichts haut einen Seemann um (live 2008). A great, relatively recent version of one of Udo’s first songs, from the days of the Panikorchester in Hamburg’s Bunker. Thomas Kretschmer was the brilliant guitarist in those days (‘Daumen im Wind’), and she is here again as Carola Kretschmer playing a really great solo. So there are half a dozen of stories going on here in this recording!
What’s hot
Tilt tables
What’s cold
Empty batteries
The German word/phrase/verse of the day
Kipptisch

So I had reached a point where life became almost bearable.

When I thought that I could possibly deal with this horror that my life had become and go back to normal (whatever that might have been) for a couple of hours a day, every day.

The split second I thought I could begin, again, to remember things from the present, to create new memories in my mind from the present, to start looking back at them, instead of looking at pictures of a year and more ago, recalling images from that past and beyond, wondering what could have been. What should have been. Looking into a future that will not be like I or any of us, least of us Pádraig, would have imagined as it is.

The point where I had forgotten the physical shock I had felt again and again. Thinking that this is what turns your hair grey, what makes your ears create those non-existing rings, what makes you wake up in the night not being able to go back to sleep. Not wanting to go back to sleep.

Over the past few days I learned, more, I experienced, that I have not yet reached this point. I have not reached this point yet where ‘stuff’ acquires meaning, importance, urgency.  I am trying hard and succeed at times, for a time, and ask me, all the time, whether I really want to succeed in my efforts to live the fiction of the real life, when nothing rhymed.

Pádraig was back on the speech valve, back in the wheel chair – though ‘back’ is not really the right word! He continued on his way to recovery. Pat discovered that it seems to be easier for him to ‘say’ yes and not with his tongue: move your tongue to the right – it’s a ‘yes; move your tongue to the left – it’s a ‘no’. In a way, he is becoming bi-lingual (as all good Irish people are). He can now ‘speak’ with his feet and with his tongue. And not just ‘speak’ but process questions (still simple ones) take a yes/no decision, and give an answer – with his feet and with his tongue. I mean: what will be next???!!!

Yesterday, there was an article in the Irish language supplement to the Irish Independent, Seachtain, of which a very good friend sent on a copy:

For our non-Irish speaking friends (and those who want a bit more than MT:) : –

Members of an international group from the Localisation Sector recently took on a challenge when they climbed Djouce in Co. Wicklow in order to fundraise for Pádraig Schäler.
They were in Ireland this month as part of the international conference “Localization World”.
Pádraig’s father Reinhard is a highly respected expert in the field of localisation. His colleagues decided to climb the mountain to show their support for Pádraig’s family and to raise money for him.
Pádraig, a young Irishman from Dublin was on a J1 visa in Cape Cod last year when he was injured badly. A van knocked him off his bike and left him in a coma.
Pádraig is currently in a hospital in Germany where he is receiving necessary medical treatment that is not available for him in Ireland.
33 people reached the top of Djouce and raised their company’s flag there. 10,000 euro was raised, all of which will go towards the high cost of Pádraig’s care.
Reinhard explained that he was taken back when his colleagues told him what they were planning to do.
“I told my friends that it was a tragic time for us but that I didn’t want to become a source of pity. Their answer, however, was that they were simply trying to help us. It was a wonderful thought.”

I wonder – was this the only newspaper and general media coverage Localization World got in Ireland? – And it’s in Irish!!!

Hope the ‘legal runners’ had a great day today and I’m looking forward to their report!

Oíche mhait mo chairde

Came in this morning and the boy was gone – sounds like the title of a southern song. (Or the first line of a totally new song? 🙂 Today, it wasn’t just the title of a song though, it was reality. A bit like the tomb on Easter Sunday, his room was empty, no sign of him, just some sheets left behind. Where had he gone? What had happened?

Turned out that doctors had decided he needed another CT. Last night’s emergency CT did only provide a slightly blurred image of one particular part of his brain apparently, so they re-took it to be sure to be sure that everything was fine. Thankfully, everything was fine. (Later, I checked  and found that the radiation doses received from CT scans are 100 to 1,000 times higher than conventional X-rays. He head must glow in the dark at this rate being exposed to these x-factors!)

In the morning, we had a long talk with one of the senior doctors looking after Pádraig. She confirmed that there were valid arguments in favour and against starting medication to treat Pádraig against epilepsy. We decided not to go ahead with the medication, giving him a chance to deal with whatever was coming his way himself as long as this was not dangerous. The (junior) doctor continued to observe him during the day, carrying out various checks and tests.

Strangely enough, the therapists working with him today found him to be quite alert and responsive, answering yes/no questions and moving his feet, and his tongue following requests to do so. He also seemed to successfully have dealt with his oncoming infection: his heart beat and temperature went down back to normal.

What happened yesterday and today was quite disturbing. We were reminded of the fact that there are many things that could happen to Pádraig at any time. Although, if you think about it, in that sense he is no different than any of us. Over the past weeks and months, he had got better, bit by bit, which made us feel perhaps too ‘comfortable’… Yesterday and today, we were also reminded that there are really good doctors around him who know him quite well, who don’t panic at the first sign of something ‘new’ and let him try to figure things out himself. There is no immediate danger for him (that was excluded with the various tests and CT scans they did) and I think it might be better to let him go his own way (as long as it is safe) than trying out medicines he has not used so far, shining lights into his eyes, and pinching him to see how he reacts. We know he reacts. Because he moves when we ask him to move. Because he can ‘answer’ yes and no. Simple as that.

Last night an amazing extraordinary meeting took place. Here is what came out of it.

Ahoy, Friends,

We had a fantastic meeting last night. Thanks a million to all who came. For those of you who couldn’t make it, don’t worry – there’s still lots to do and you’re all very welcome to come along. Look below to catch up on all the deets. A good start is half the battle! (…dodge translation of Irish proverb)

Few things to remember

1: Irish words. Maitiú is working on this, but if anyone has any ideas throw them his way. These should be finalised by tomorrow hopefully. The bits that are in need of doing are the sections where Maitiú is humming on the demo.

2: Practice – Woo! Our first practice will be at 8 in the Conradh this coming Tuesday 24th. The chords will be going up on the FB page later today, so be on the lookout, and use those as a guide to help you get to grips with the song!

3: Dates to keep free. Síobhra is organising a warm up party on 1st July that will charge money and hopefully help raise funds to cover the cost of the studio and CDs. The recording will be happening on the ensuing days 2nd and 3rd July, all day both days. NB – we decided the 3rd and 4th last night but this actually doesn’t suit a couple of people. Is everyone fine with this change?

4: Video – Claire – can you ask Matt Taylor if he / his colleagues able to shoot the video for us . Otherwise, we do have the offer of Raidio na Life cameras. Would someone like Sibéall be able to do the camera work / have the expertise? – Maybe Caoimhe or Matt could check?

5: Artwork – we decided to have a competition to see who would do the artwork for the cover. Could be a bitta craic alright.

6: Throw the poems and other creative titbits in with the track – Ciara / Marcus!

That’s it for now! Listen to the Demo, and get practicing! Onwards and upwards! Waheey!!!! #Eurovision ’15

It was amazing to see the reaction on Twitter to this: Eurovision, the Shay Byrne show on RTE 1, Kieran Hanrahan of Ceili House on RTE 1, and a whole range of broadcasters, radio shows, and print media re-tweeted. Got this feeling that this is going to be big!!!

Finally, three incredible stories about the ongoing fundraising efforts:

Loads of news tonight.

There was the extravaganza we all would really have liked to join! Looked like a wholelottafun!! Twitter was alive with pictures from the #SongForPádraig and the #AmhrándDo Phádraig. Looking at all the “beautiful people” involved it’ll be the song of songs.

There was the report in the Limerick Leader about the Table Quiz and the background story to it.

And last but not least, Pádraig, the man who gets us all involved in never-heard-before-of extravaganza’s had his own double scare today. Pat went in to him in the morning to be with him for the use of the speech valve and when sitting in his wheelchair. All routine stuff. Only that today routine was not the order of the day. He had a rising temperature and a high heart beat. Enough to skip the speech valve, enough to skip the wheelchair. By midday, the senior doctors had decided not to give him an antibiotic straight away but to give his body a chance to fix itself. So it was good auld paracetamol instead of the heavy ‘guns’. And – it worked. The temperature came down and all his other vital parameters returned to almost normal by late afternoon. Which is when his nurse called a (junior) doctor to check out his cramps. One test followed the next – all returning more or less ok results. The doctor felt with 80% certainty that Pádraig had an epileptic fit. So late tonight they did a CT which luckily did not show any obvious new injuries in his brain. So just before 11pm, we got the phone call to say that we could go to sleep without worry. The doctor will give him an anti epileptic drug tonight and tomorrow we will have a conversation with a senior doctor to find out more about the ‘seizure’ and the medication they propose to give to Pádraig. – To be honest, I find it hard to believe that Pádraig did, in fact, have an epileptic fit,  almost 12 months after the accident, and I would it find even more difficult to accept that he should start taking medicine, possibly for the rest of his life, that would quite dramatically interfere with his health and state of mind. We’ll see tomorrow, I am sure!!!

Yesterday, Pádraig received a be-lated birthday package with a great gift: a Happiness Kit. I had never come across a Happiness Kit before. I wonder what the customs people thought when they read the description on the envelope!? It probably made them smile! What a nice idea! Luckily, the ‘piece of string’ is 50m long – so nothing will fall apart here!

Today, I couldn’t believe my luck: Germany’s Father’s Day was just over when Ireland’s Father’s Day was coming up. Two Father’s Days in such close succession – any father’s dream! So today – Irish Father’s Day -, I didn’t get up. I stayed in bed, in anticipation of my lovely family bringing in my nicely buttered toast, hot dark coffee, and a soft boiled egg. I must have dozed off. When lunch time was coming up, I decided it was time to get up, just face up to the real world (and not to feel too bitter about it), to recognise that I had missed breakfast, and to make sure that I was not going to miss lunch as well.

Someone in our family – and, unfortunately, I don’t remember who it was – once asked why we couldn’t be just like any other family, just a normal family, like everybody else? I was asking that myself this morning: why could we not just be like everybody else? Surely, in any family all over Ireland today fathers were treated to breakfast in bed, right? Why do we have to be different???

Pádraig sat out in his wheelchair today. Mightn’t sound like anything special, but it is. Very special. Because it’s Sunday and it takes the initiative and the time of the nurse in charge of him to organise the transfer and get him out of bed – which hadn’t happened for a long time on a Sunday. (During the week and on most Saturday’s it’s still the therapists who are moving him into the wheelchair, something we hope to be able to do ourselves some day soon, just to give them a hand.) It was great and encouraging, he needs to sit up as much as possible for a dozen different reasons.

He also was on the speech valve. And here comes his present for Father’s Day: he made sounds and we believe that they were purposeful, several times! The first time when Pat was trying to teach him the ‘A’; the second time when he was on the phone to his aunt who asked him to say something; and the third time when the nurse tried to get him to say ‘A’ in German – her name starts with an ‘A’ 🙂 He also continues to successfully answer the simple yes/no questions – not always, but now over several days.

Just a reminder that TOMORROW at 8pm will be the meeting in the Conradh to get everybody together who would like to take part in the next round of the recording of Amhrán do Phádraig / Song for Pádraig.

Today’s (German) Music Tip
Loudon Wainwright (Fufus’ Father), Father and Son (1998) – not a German music tip today, simply because I could not find a song for Father’s Day in German. There are a few in English, this is one I didn’t know before. I like the lyrics, it’s a song that in many ways is very close to reality without being too ‘sweet’.
What’s hot
Father’s Day
What’s cold
Waiting for breakfast in bed ’til lunch time
The German word/phrase/verse of the day
Da kannst’e lange drauf warten!