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…

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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.

When I see Pádraig getting better, when I see him drinking a little, eating pureed fruit, standing up almost straight in his ‘stand-up’ bed, I find hard to believe what I’m seeing. There is non-stop progress. The way he keeps trying so hard.

Psychologists say that you have to push your boundaries. You have to leave your comfort zones and venture into the unknown. Not only does that give you an interesting and colourful life, even when you’re getting older, they say it also prepares you for that time in your life when stuff happens that realistically you cannot prepare for.

You know you’re getting old when you talk about concepts that younger people do not understand anymore. Like when Pat and I were talking some years ago about our memories of getting a colour TV, and Patrick asked us what colour it was?

You know you’re getting old when young people talk about concepts that you find hard to relate to. Like going into ‘clubs’ and not into ‘discos’. When you see them sitting around a table not talking to each other but posting news onto each others’ Facebook pages.

When you know you’re getting old, pushing your boundaries is especially important because when you’re young, you’re doing it almost by definition.

Nobody was prepared for Pádraig’s accident. But it is because people are pushing their boundaries that we all just about manage to cope. His sisters are doing exams, studying and working hard, with us not being around a lot of the time to help them, even with small things. That they manage is pushing boundaries big time.

The wider family and his friends, and the families of his friends, are doing things they never thought they’d be doing pushing their boundaries: they visit Pádraig in Hamburg, they organise events, they swim, run, and jog, they share their knowledge, expertise, and experience; they take time out to help with big and small things; they are showing a generosity that restores my breath that had almost been taken away by the lack of care and, at times, astonishing ignorance by the ‘system’ and its representatives.

How could we manage to get them to push their boundaries?

Almost a month after my mother, another mother passed away. She knew Pádraig. Her family agreed that she would have wanted that her car, a wheelchair adapted Fiat Doblò, would have been given to Pádraig. This is an incredible manifestation of generosity. – But it doesn’t end here.

In the meantime, I spent the day getting the car on the road for Pádraig. It all took a bit longer than planned, with lots of waiting and hanging around, but now it’s ready to be driven to Hamburg. There were newspapers in most places where I had to wait.

Pádraig was doing well today. His doctor came in for a check-up, the physio did his work with him, only the speech therapist didn’t make it.

Here are two of the headlines and articles that caught my attention.

The first is quoting the incredible waiting figures in the Irish health system. The other confirms that the countries offering free or heavily subsidised sports activities to kids are on the right way. The two examples are key areas where the Irish government need to make changes, investments – rather than talking about lowering taxes or handing out the money.

As I mentioned, there is more going on:

Keep the date!