Twitter went mad today with gazillions of tweets about that brilliant video and song, that went viral today on youtube and www.amhrandophadraig.com: Pádraig, by the unmistakable Marcus Mac Conghail & IMLÉ. It’s based on the poem by Ciara but took a bit of a life on its own (just watch that marathon:). I love those hearts appearing out of nowhere and being painted in the sky by specially commissioned aeroplanes. It’s like ‘love comes to town’, only better.

It’s evening and, instead of watching the news, I’m sitting on a plane from Frankfurt back to Dublin, at 30,000ft, watching the clouds in the evening sun below me. This is one of those mad trips that, soon, I won’t be doing anymore. Last night I slept in Rot (near Heidelberg), tonight it’ll be Dublin, tomorrow Limerick, on the train the night after and then driving to catch another train, on the train on Thursday night again, and Lourdes (yes, Lourdes) from Friday night.

Being away from Pádraig from yesterday lunch time has been very strange. To see what’s going on in the rest of the world is almost as strange. Talking to people about all these things that have been so important to my (professional) life for decades is almost surreal. Some things I’ve been working on for a long time, are just now really taking off. At a time, when life has been changing as dramatically as it could.

Seeing Pádraig react to new things around him: music, the sound of birds, wind, sun, movement, driving, life – is incredible. Feeling the love that no words can describe, and I never knew existed as strong as it is does, the energy this love generates in so many people around the globe, all these mad things people are doing because they want to express their solidarity, because they are getting inspired by his fight for life, heart painted in the sky, poetry and song – is giving so many people a taste of what it means to be human, humane. It reduces all it touches to the essence of what life is, means and exposes the ‘noise’ that surrounds us to what is is: noise.

A few times I have tried to change the world, the people, trying to explain to them what is the right thing and what is the wrong thing to do. Looking back, I don’t think anybody really noticed. Ever. What happened to Pádraig has changed me. And it has had a bigger impact on more people, it has brought out the best in people in a way that is magic. So magic that it has already changed the world, in a small but significant and very real way for many.

First of all: thank you all so much for your great music suggestions!!! If you can think of any more new songs Pádraig might have missed out on in the past year or so, please let me know!!

At lunch time I learned what “SEV” stands for on a German train time table. I had been wondering why the train times had changed when I looked them up on the web. Maybe they were different on Sundays? When I got to Tonndorf Train Station and checked the time table there, there were no changes. And there was no train at the “changed” time.

There just was no train.

Because, yes, you guessed it, “SEV” stands for Schienenersatzverkehr, in other words: busses were running instead of trains from Tonndorf today.

Pity that by the time I had figured that out, the “SEV” I was supposed to get had left.

I could go on with this story for a while – but, eventually I made it to Hamburg main station, just in time to catch my train to the South of Germany , where I am tonight, getting ready for a days work in a company, then to Dublin in the night, and an early morning start to drive to Limerick. – I’ll tell you about the rest of the week at it’ll progress. It’ll be hectic.

Of course, Pádraig was at his best today. Long hours in the wheelchair, long walk out, great phone call with his uncle in America, exercises, great eating and drinking, standing bed, head control – the list goes on. Pat said he was really happy because he enjoyed doing all this stuff. Living. Life. Trying really hard. Getting tired. Breathing. Feeling the rain and the wind. Smelling the grass, the trees, the flowers.

I’m going on down to Yasgur’s farm
I’m going to join in a rock ‘n’ roll band
I’m going to camp out on the land
I’m going to try an’ get my soul free
We are stardust
We are golden
And we’ve got to get ourselves
Back to the garden

This must be the best version of Woodstock with Joni Mitchell telling how she didn’t make it to this festival having been with this new band called Crosby, Stills, Nash and Young the previous night and then watching Woodstock all day on the telly…

Today’s German Music Tip
Heino, Willenlos – Heino in Hamburg, sings Marius Müller Westernhagen, an absolute deadly combination. I heard that on last Friday night on a jukebox (!) when I was out for the first time in months with a good old friend and we were wondering whether this was for real. It was. Was ist mit dir los?
What’s hot
The Garden
What’s cold
Car Parks
The German word/phrase/verse of the day
Was’n mit dia loos?

Escapism just got a whole new meaning. Saturday night on German TV cannot be beaten. Just now, there is a band playing, following hard on the footsteps of Chris de Burgh, which has had “außerfriesischen Erfolg”, Santiago – with “Lieder der Freiheit”, Songs of Freedom.

But, to a more serious question: when did yo last check amhrandophadraig.com?

Well, check it out. Tell you friends to check it out. Tell your mother, your father, your aunt, your uncle, your TD and local publican to check it out. On Monday.

There are rumours that a new song will be posted there, called, what else: Pádraig. On Monday.

We went on another practice run today. A spin on the autobahn. No doubt, it’s a bit tight there in the back, but it’s working. We’ ll have a 2-hour+  long drive on Thursday morning to catch the train to Lourdes on Thursday very early in the morning which is now looking good. No doubt, we’ll make it to catcht the train, not to Georgia, but to Lourdes, at 5h50 in the morning:)

Back in the apartment, Pádraig had his dinner. And for the first time, he held his head up high, all by himself, for quite a considerable time. It is so amazing to see him progress like that. Holding his head – something one of his therapists in the hospital didn’t think would happen.

Thank you to all who keep the music ideas for Pádraig’s play list coming. Keep thinking of music that came out recently that you think Pádraig would have liked and I will get him a CD or two, maybe three, to listen to, getting up-to-date with new music!

Last night I went out (yes, I did go out!) with an old friend. We decided to do a cycle charity ride: from Long Beach to Nappa Valley in or around April of next year.

Whatch this space.

Please: keep the music ideas coming! Music you think Pádraig would’ve liked and which was published over the past year or so.

You will remember that I talked about different gadgets that I thought could help Pádraig, and persons with similar injuries to his, help communicate.

One of them was the Emotiv EPOC headset. If you don’t remember, have a listen to Tan Le introducing it during a TED talk she gave five years ago, a talk that has been viewed 2.1m times.

Today, the headset arrived! – It looks really interesting but also a little bit tricky to use. Certainly lots to learn about this new and evolving technology. If it really worked, just imagine: a computer programme interpreting Pádraig’s thoughts and acting on them!

It’ll take some time to figure out how it works but it will happen!

I had to look this up: Kazakhstan. Never mind that it’s the most difficult country name to spell, short of Czechoslovakia, and that country doesn’t exist anymore. but where is it and why is it important to know?

“I’ve never seen an organisation as badly organised as the HSE.” chipped in healthcare consultant Martin Turner, which is something given that he has advised governments in Iraq and, wait,  Kazakhstan. The HSE was not a learning organisation and safety was not on its agenda, he said. (Irish Times, 9 May, 2005, page 5)

Martin Turner was brought in as one of the international experts to investigate the case of the “Midland Babies”, babies that died in Portlaoise hospital.

Mark Molloy, the father of one of the babies who died, said that he and his wife felt they had been “on a solo run” for two years and they had “worked within the system”. – “We thought we were telling people, at hospital level, local and national level, things they didn’t know, and it turns out they did and they stood by and allowed further unnecessary deaths. (Irish Times, 9 May, 2005, page 5)

Someone else (can’t remember who) also said that there was no reason not to believe that these scandals are restricted to Portlaoise or, indeed, to women’s or babies’ health.

Today is Ascension Day and, in Germany at least, “Vatertag”. Nobody remembered:(

Pádraig has started to play a game: picking up corks, lifting them up and ‘throwing’ them into a separate container. He needed a bit of help to hold his arm, but he can to it…

ll

Where are the songs Pádraig missed in the last year? Let me know. Put the titles in the comments… 🙂

Anyhow.

It always had to be Plan B.

Even when I didn’t know. When no-one knew. Then.

Because Plan A, that’s the one where we were going to continue doing what we had been doing. What I did when my father died – I was in Cincinnati, he had told me to go, not to worry, on the way back I was sitting on the plane to Dublin when they opened up the doors again and put me on a different plane, to Frankfurt, far enough to take too long. What I did when my sister died – this time I stayed with her until the Sunday before the Monday she died, nothing was going to be the same, life was going to be different, everything was going to change, and then I slowly slipped back as if nothing had happened.

Pádraig was ok today but I want to do more with him because he can. Fun stuff. To put a smile onto our faces. Not the struggle-kind-of-stuff. The ‘I think he’s tiered’ kinda stuff. Not the choking kinda stuff. The routine stuff. Oh, how tired I am of routine! And how much I yearn for it.

Nothing will ever be the same. Never was going to be. In any case.

Did you know that Joni Mitchell wrote ‘Both Sides Now’ when she was just 21?

And I get the urge for going
When the meadow grass is turning brown
And summertime is falling down.

Today’s German Music Tip
Udo Lindenberg, Ich bin der König von Scheißegalien (2004, 1998). You can find the lyrics here, if you can find the song online, let me know – it must be Udo’s only song that is not available on the web…
What’s hot
Plan B
What’s cold
Plan A
The German word/phrase/verse of the day
Insektenhotel

Just watched ‘The Diving Bell and the Butterfly” and wondering whether it was a good idea. The scene in Lourdes sticks to my mind when Celine buys The Madonna. Or when Jean Do feels his memories are fading away. Or when he remembers shaving his father.

Pádraig seems to start living his life. He is engaging more. He seems to take in more. The less drama there is, the more things are becoming routine. I went to see an OT clinic today to see would they do house visits. It seems they do. They promised to call me soon to arrange for trial sessions.

I chatted to them and found out that for the price of 5 hours of OT per week over 48 weeks in Ireland, you’d be able to hire a full time OT in Germany. Made me think.

At times I feel such a deep loneliness because the feelings are so intense that you can’t really share them – almost as if I was locked in. Unfortunately, I’ve never been a person to focus on what has to be done, that would make thinks so much easier. More the candle, incense, music, soft light – person. Useless, really, and inadequate in most difficult situations.

So, I’ll be going to bed hoping that tomorrow will be a better day.

With no fear of inadequacy.

Full of energy.

Dreamboater.

I was surprised myself that I managed to get up this morning. Just.

Talked to Pat. Talked to and spend some time with Patrick. I had been away just a few days, but I really thought that he was so much better – maybe he just had a good day. Maybe he was really happy to see that I was back (nor so likely) or maybe he had understood that his new car had just arrived (more likely)?

I was ready for a nap at midday, but there was far too much excitement.

So I did a dry run, with an empty wheelchair. And then with myself in it.

When that worked, we went downstairs with Pádraig.

The back entrance

Checking from the side

Doors closed and ready for lift-off

Checking the top floor roof garden

The garden and Café he was not allowed to visit

It will get better with practice, we told each other. Eventually Pádraig was in his new car and his seat was secured.

We decided to go to the Schön-Klinik to walk the grounds he was prevented from visiting and to go into the coffee shop he could not go into when he was there – to have coffee, Kuchen and iscream.

It all worked out brilliantly. I cannot describe the feeling: to be able to get around in town, maybe to go to Tating for a night. This car will open up a whole new world, a whole new dimension to Pádraig.

And the best thing is: he realises this and was as excited, happy, and nervous as we were.

What an absolutely incredible, brilliant, joyful day!

It’s hard to feel any sense of pride or citizenship living in this country when you have a disability. (Rosaleen McDonagh)

We ran for the best seats the moment we got out of the car. Unfortunately, we all had our own opinion about what those seats should look like. Beside the window, but on which side? A table in the middle, but with separate seats or a bench? There were endless options. So we ran off into different directions.

Once each of us had found their own perfect seats and table, we were faced with the challenge to find the rest of the family without giving up the table and seats. So we left our bags and jackets spread out and started to look for each other. Finally, we agreed on just one table and seats, and settled.

Next came the breakfast. Buying the same ‘full breakfast’ would have been the easiest solution, but far too expensive. So we bought a combination of different breakfasts, got another set of plates and cutlery, and shared. In the meantime, I studied the maps.

Today is different. I’m on my own, bringing Pádraig’s new car, so generously given to him by dear friends, to Hamburg.

So I bought my own ‘full breakfast’. Sat down on the first free table I found. Realised that I had no map with me (honestly, who on earth is still using maps these days) and will not have a working internet connection in the U.K. (mmmmhhhh). And started to read the Saturday Irish Times.

Probably for the last time. It’s so depressing.

There is a long account of the case of ‘The Midland Babies’ in the Weekend Review, starting with the assertion that “A series of newborn deaths at Midland Regional Hospital, in Portlaoise, was exposed only through the grim determination of five bereaved families, and some chance encounters.” The article recounts how the families had to struggle, over years, just to find out what had happened to their babies. Some of them spent years trying to encourage the HSE to investigate the deaths, trying to help the HSE with what they knew about their children’s deaths – only to find out, eventually, that the HSE had known the cases and their details all along, had, in at least one case, carried out an investigation without even telling the parents of the dead baby. The truth only came out and HIQA’s investigation only took place because the parents mobilised public opinion.

This is how you get justice, it seems.

Next page: an article by cerebral palsy sufferer Rosalyn McDonagh highlights the love by many in the Irish disabled community for Christy Brown. Now, an exhibition celebrating wheelchair using artist Christy Brown is opening in the Little Museum on Dublin’s St. Stephen’s Green. Unfortunately, the building is a protected structure and has no wheelchair access. Rosalyn writes, “In the case of this exhibition an audience of central importance is being ignored. It is a missed opportunity for diversity and sharing. … On this occasion, disabled people don’t seem to matter. These transgressions are not incidental or accidental. If there’s a climate of disrespect and exclusion they become the norm. It’s hard to feel any sense of pride or citizenship living in this country when you have a disability. Seeing an exhibition like Dear Christy would have put a smile on our faces.”

Disillusionment and frustration instead of smiles on the faces of people who are in such a need of occasions that put a smile on their faces.

Yesterday evening, I met with friends who are helping us to build an extension for Pádraig on the ground level of our house. It was another, just incredible, demonstration of the love and support that he is generating, bringing out the best in so many people. Organising this on our own would have been very difficult. Now, I’ m going back to Pádraig to tell him about the new rooms and all the enthusiasm of the people helping us to get them ready for him.

Pádraig will need to get home. And we all will have to make sure that there will be loads of smiles, inclusion, life. We will have to work very hard to ensure that people with a disability can feel a sense of pride or citizenship living in this country.

It won’t be easy. But worthwhile and worth of true Dreamboaters.

P.S.: It’s 2:57am on Sunday and I just arrived. However, this will still be Saturday’s blog:)

The Doblò, parkt safely in the garage just a few minutes ago, after a 17 hour drive.