Goodbye

St Patrick’s church was where today’s Requiem Mass was held for Sara. The church was packed to capacity to celebrate Sara’s life and to say good-bye to a very beautiful young woman and a fighter like no other. Pádraig and I were there in spirit. Sara will always be with us, we will never forget her. She and her family, Mary, Martin, Niamh are so much part of our new life. There were prayers of the faithful that included a prayer for all victims of severe ABI in Ireland that they will receive the treatment, therapy, and care that they so much deserve. Nobody like Sara and her family making that case over the past years.

You might remember how Pádraig managed to hold the mobile while talking to his aunt. Well, today he did one better. I never know when they are finished talking – except today Pádraig handed over the phone back to me when his aunt had hang up. I don’t want to make too much of this, it could all have been coincidence and it was really not much more than a movement of his arm with the phone in his hand – but…

This weekend they will fly back home the bodies of those who died in Berkeley. I just hope that the best of care will continue to be given to those who were badly injured and who are staying behind, at least for the time being.

Tonight, for Sara: Sarah Connor, Wie schön Du bist

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Hospice

Pádraig is doing well. Except for 30 minutes today, when I got onto the super-dooper all singing and dancing Vojta therapy table under the watchful eye of his physio to learn how to do exercises with Pádraig a metre off the ground. The exercises are, of course, designed to help Pádraig get a better orientation, regain a good feeling of his body, and keep him flexible. At the end of those thirty minutes I thought that there was an immediate need for me to do a bit of work on my own body!

WallWe are still thinking all the time of the J1ers in Berkeley. It is great to see that the movement of solidarity with the victims of the Berkeley tragedy and their families continues. According to berkeleyside.com, a relief fund set up by the Irish Immigration Pastoral Center to help the immediate needs of the families and students in Berkeley, the Irish J1 Berkeley Tragedy Fund, has raised more than $100,000 in two days, on a goal of half that.

For the families affected, it will still feel like as if they were just living a really bad nightmare. When they wake up they will hope that what seems reality might just go away. That is if they sleep at all. The more of the logistics can be managed for them by others, the better. And I hope that whatever needs to be done to help them will be done. I remember in horror the ten days and nights it took for Pádraig’s J1 Insurance Company to be persuaded to pay for his hospital treatment and repatriation. There were days when we thought that, in addition to Pádraig, we might also loose our home.

What is transpiring from the building and the contractor that put it up is astonishing. It sounds like something from the third world. No doubt, the next question will be who was responsible for allowing this to happen. And no doubt, each of the players will pass on the buck, as the US-Americans say.

UnknownTomorrow morning, Pat will go to Dublin to attend Sara’s funeral. Her parents, sister, and the rest of the family are going to the worst of times. Having fought for years for their daughter and sister to get the treatment she deserved, having pleaded with doctors, health officials, airing her frustration on the public airwaves, Sara died in St Francis Hospice in Blanchardstown, in what Unknown1must be one, if not the most beautiful, the best equipped, and most professionally run caring facility in the country. It is not run by the HSE and it is free. Above all, there is none, absolutely no return on investment whatsoever into the care of the clients there – except their love and dignity.

They are, no doubt, dreamboaters.

It’s a one of the tragedies of today’s Ireland that you only get to know them when you are about to die.

Kiel Canal

UnknownToday, I went to Tating with one of Pádraig’s sisters to sort out some paperwork, to collect the post, and to see that all was ok. I hadn’t been up there for a while. Getting out of Hamburg, up onto the motorway, crossing the Kiel Canal (the Nordostseekanal), Europe’s busiest artificial inland waterway, where we always look out for the big boats, driving through “Kotzenbüll” (you do not want to live there), through Garding and passing Lütt Matten, was strange. It’s where we went almost every Friday night, stopping by to have a pint (Seos got me pint glasses which I left there) and to listen to the live music.

We haven’t been there since January.

However, during the summer months, we’ll go there together and we’ll have a great time. It won’t be like having a pint in Dublin, but it’s second best, like a rehearsal or a Generalprobe.

Pat made arrangements to attend Sara’s funeral on Saturday. How much would I like to be there in person to say good-bye.

Sara

11206888_466084373553245_1363324125379369303_oThis morning, Sara Walsh Delaney died. In Beaumont, Sara had been in the same room as Pádraig when he arrived there in late 2013. We got to know her and her parents quite well and had staid in touch with them ever since. They came to Germany just a few weeks ago to get very specialised and intensive therapy for Sara. Back in Ireland, her health deteriorated and she moved into St. Francis Hospice in Blanchardstown.

Sara was an inspiration to us. During the time we knew her, she showed such a strength and shared so many beautiful smiles with us. We learned from Sara that you never give up, that you have to keep fighting, and that an acute hospital is the wrong place for you when you need therapy and specialised care.

Sara’s long journey came to an end this morning. It was a journey that her parents accompanied her on all the way. They were always by her side, always fighting her corner. She could not have had better advocates and friends in them.

Tonight, my thoughts and prayers are with Sara’s family. They lost the most beautiful daughter. But, I am sure that her spirit of love and their care will forever keep them together as one.

May she rest in peace.


We were up most of the night. Pádraig didn’t go to sleep up until after 1am. Pádraig’s sister were in touch with some of the friends in Berkeley at that apartment house, waiting for the parents of their dead or injured friends to arrive.

This morning, listening to RTÉ, I could not but re-live those days almost exactly two years ago. When Pat arrived back from Germany later in the morning we were thinking about a way we could help those families on their way to Berkeley. Then one of RTÉ’s lifeline researchers rang and two hours later, I was talking to Damian O’Reilly, standing in for Joe Duffy.

There were a few things I had planned to say but didn’t manage to squeeze in to the conversation that focused on the great support the Irish provide to those living through moments no-one should have to live through. Charlie McGettigan from Co. Leitrim whose son died 17 years ago on a building site when he was 21 years old; Yvonne, whose son Keith died while on a J1, I think 7 years ago; as well as Anne-Marie, whose son died while on a J1 in the US I think 4 year ago and who has been campaigning for an Irish death cert for her son and others who died abroad ever since – all could not speak highly enough about the support they received from the Irish in the US and at home when they most needed it.

I felt a bit as the odd one out: After all, Pádraig had survived his accident. And Damian O’Reilly acknowledged this when he said that at least Pádraig was still with us today. That is why I wanted to say something to the parents, families, and friends of those who survived this terrible accident, some of them with life-changing injuries:

  • Stay strong. Time will not make you forget but will help you to cope.
  • You have time. Nothing needs to be rushed. But stay on course and keep going.
  • Trust your instincts. Whatever doctors, insurance companies, or the police say – believe in yourselves. You know best what is right and what is wrong.
  • If you think we can help in any way, let us know.

We are with you.

Bloomsday

Just arrived back in Hamburg, hearing about the terrible tragedy that happened in Berkeley where six Irish students on a J1 visa died and eight got seriously injured when the balcony of an apartment where the students were celebrating the 21st Birthday of one of their friends collapsed. One of Pádraig’s sisters knows people who were at the party and has been in contact with them. They are ok but some of their best friends passed away tonight. Ar dheis Dé go raibh a anam.

Tonight, Ireland will stay awake. Families will be trying to get onto flights to San Francisco in the morning. Parents will not believe what they are hearing.

I wish them the strength and the support they will need over the coming days and weeks.


On my way over today, I started to write. I had time. When I was writing, I had, of course, no idea of what was happening almost in parallel in California. I would not have written this had I been aware of the tragedy happening at the same time in Berkeley. I would not have said that the world would keep turning and life would continue as before – because I know from my own experience that time is suspended when a tragedy like this happens. The world stops turning, stars are falling from the sky and the moon and the sun disappear, leaving you in something like a black hole… 

I listened to Niamh Kavanagh’s In your Eyes again which now, today, acquired a whole new meaning.

imagesDo you know the feeling when your mind detaches from your surroundings and all of a sudden you get the feeling that you are watching a movie? Well, that’s what happened to me earlier. When, all of a sudden, I realised that all these people, so busy with their lives, would all die. Not today, not tomorrow. But one day, their turn would come and in one second, all their efforts, their work, whatever they had bought, whatever they had enjoyed – all of that would disappear with them.

Of course, nobody would even notice that, except for their families and friends – but in the grand scheme of things, the world would keep turning and others would take their place.

Screen Shot 2015-06-16 at 17.54.54On Sunday, I had learned that one should never agree to play the part of poor Paddy Dignam on Bloomsday when people around the world, but especially in Dublin, dress up as the characters described in James Joyce’s Ulysses in order to re-inact that day, 16 of June 1904, described in details in one of the most famous books of all times. The reason is simple: poor Paddy Dignam was dead that day and, therefore, you would most likely spend the day dressed up as a corpse in a horse-drawn open hearse. (The man who once ended up as poor Paddy Dignam, today re-inacted one of the more lively characters of the novel and was planning to perform “The man who broke the bank at Monte Carlo“.)

I am on my way back to Hamburg via London Gatwick with Ryanair and onwards with the one airline that is worse than Ryanair, Easyjet, to Hamburg, because of what I would call, in the nicest of ways, ‘adverse circumstances’: important meetings at work running into the afternoon which I had to attend, apparently there was no way out of it. It was just too important. Truth be told: I felt like poor Paddy Dignam during those meetings, pretty useless and not very much engaged with what was going on around me. I guess it’s all a matter of perspective.

While I was away, Pat also had to come over for work (but only yesterday) and Pádraig’s sister had to look after him yesterday in the evening and during the night. She was in awe how much he helped her last night, turning him into comfortable positions at regular intervals. For the first time, she was looking after her brother on her own and the two managed brilliantly. It’s great to know that they got on so well and that, in addition to Pat, her sister, and myself there is another person who can take care of Pádraig overnight.

IMG_1219In Dublin, I emptied the sheds so that they could be demolished by the builders preparing the ground for Pádraig’s extension. Stuff I hadn’t seen for decades surfaced and was distributed across our back garden.

Among the stuff was a big tent we had spend the summer in, in Santander, the year Niamh Kavanagh won the European Song Contest with In your Eyes (1993).

IMG_1225That summer in Santander was so wet, they closed the outside swimming pool on the camp side. All those memories came back when I pitched the tent, most likely for the last time, to provide interim shelter to the lawnmower and all those long-treasured absolutely useless things I’d taken out of the shed. The result is an airy, summery feeling in our back garden.

 

Wasteful

You probably have had this feeling at one time or another, that you were doing something that was just a waste of time. Something at work when you were told to do something to ‘tick the boxes’, or at home when no-one appreciated that special effort you had made. There are many examples you could think of that demonstrate how valuable resources are being wasted, I am sure.

Pádraig continues with eating and drinking, all things that were completely of out the question.

A friend of Pádraig’s from way back in Beaumont, whom I visited yesterday (her daughter is now in Blanchardstown) shared this card with me that, I believe, is soooo relevant to our situation.

IMG_1207When you read it, it sounds ridiculous. But then – it requires very little adaptation to hear the voices of the government officials that told us and other parents to give in, to give up, to leave our loved ones in nursing homes, and to start looking after ourselves.

Today’s German Music Tip
Die Fantastischen Vier – Die Da!?! Ist das deutscher Punk?!
What’s hot
Essen und Trinken
What’s cold
Wasting time, stuff, effort…
The German word/phrase/verse of the day
Für nichts und wiedernichts

Sheds

Pádraig is continuing to dring more every day. He is trying to hard it’s incredible.

I spent time today emptying the sheds in our back garden. They will be removed to make room for Pádraig’s extension.

The time in Dublin always passes by so quickly. I met some old friends today – more on this tomorrow. Tonight, it’s just getting too late…

Pushing

150612 ShirtsYesterday, a package arrived with loads of t-shirts and shorts for the summer, especially tailored for Pádraig. There are friends of us who are in the clothing business (I think) and they had this idea to adapt really nice clothes for Pádraig by cutting them open at the back or the side and then adding velcro – that way, we don’t have to pull t-shirts, for example, over Pádraig’s head. It was so nice to receive that package, together with a lovely card! – It would be worth patenting the idea!!!

Sitting in Bremen Airport waiting for the delayed flight to Dublin. Maybe it’s because I haven’t been out much recently but I find this purpose-built Ryanair Terminal almost overwhelming. Getting in was the first challenge.

People were pushing as if it was a matter of life or death. One mother with a go-cart overtook everybody as did a girl who said her knee was hurting. Half an hour later, when I had made it through the checkpoint, both of them were browsing the perfume section of the shop. This time, the lady asking whether I had toothpaste (I had not) or liquids (I had not) in my bags or a laptop (had already taken that out), also asked me to take out all paper from my pockets. When I did, she wanted to pull it off me and, instinctively, I didn’t let go – after all, it was my wallet. There was a moment of tension until she put another, smaller box on the wallet and said, here you go!

Pádraig hated those ‘incidents’, always telling me to let go of my idiotic, embarrassing  behaviour, what difference did it make anyways, there were more important things in life to worry about than people just doing their (horrible) jobs. The funny thing is that I never changed anything nor did I achieve anything with my tendency to insist in all this unimportant stuff (other than to get on people’s nerves) whereas he had flight assistants offering him better seats or a second meal. He also could never be bothered to cue up for hours to get onto the plane first – why would you? We were just too nervous, too competitive, too afraid not to get the ‘right’ seats…

I spent this morning with Padraig, washing his hair, helping him to drink a glass of the nice-tasting calcium drink he usually gets through his PEG. While I was doing it, I realised again how much Pádraig is able to do, how proud he is of what he can do, how important it is to do all these things with him, to really connect with him all the time, encouraging and supporting him with all he can do, from eating to moving to communicating. I also realised again that carers cannot do this. So,…

Today’s German Music Tip
Mundstuhl, Live. No music but Comedy. German Comedy. It’s what you call an oxymoron (I had to look that up).
What’s hot
Airport Security
What’s cold
Pushing
The German word/phrase/verse of the day
Kommensemamit…

Trees

What do you think, when you think of trees? – Really now. Think!

If you were not in the Generator in Dublin last night, you lost out on a brilliant night with absolutely brilliant music by some of Ireland’s finest. Here is a taste of what you missed.

Here is the launch of “Pádraig”:


And here are the Dreamboaters going stronger and stronger:


 

Finally, here is Maitiú with a few words:


 

A huge big Thank You to all of Pádraig’s friends who sang the songs and shared their love for him. You all have no idea how much this means to him, and to us – it simply keeps him, and us, going, trying, living.

Here is something you could do: Tell all your friends about the song and send them to http://www.amhrandophadraig.com to download it.

In the meantime: have you thought about what comes to your mind when you think about trees?

You know, Germans have a deep, historical, mythical connection with trees. There are poems, songs, and tales about the German trees – and they literally turn up at every corner in Germany.

When I arrived in Ireland, the first thing I did was to plant a tree. When we moved to our new house in Iona, again: I put a tree into the front garden, and several others into the back garden. I love trees, but discovered that the Irish have a different relationship with them than a German would. They almost hate them: because during the summer they block off the sunlight and during the winter they shed their leaves and destroy the garden.

We were lucky that planted all those trees in our back garden – where else would Pádraig have put up his hammocks?

Today’s German Music Tip
Alexandra, Mein Freund der Baum (1968). Here is Alexandra talking to a dead tree. Compare that with Joni Mitchell’s Big Yellow Taxi (1970) and the tree museum she’s singing about. Would be a nice topic for an essay on alterity…
What’s hot
Trees
What’s cold
Shade
The German word/phrase/verse of the day
Da siehst Du vor lauter Bäumen den Wald nicht mehr.

Eating

I wish I could be there with you in Smithfield tonight, with Pádraig, enjoying the friendship, the laughs, the music. And neither myself nor Pádraig would mind having a pint (and himself making sure we wouldn’t be sitting too close to each other:).

There will be a night, and then many to follow.

Pádraig keeps going. When I think just a few weeks back and look at what he is doing these days, it’s truly remarkable. We went for a walk today, down the road to the the park. It seems that them famous German engineers weren’t interested in constructing footpaths. Proper footpaths without potholes. For Pádraig going down this road to the park is like a roller-coaster. Each time we walk that way, he is getting better in controlling his body. Visibly.

I checked out two websites today. They turned out to be offered by the same company but offer an amazing variety of good food for people with different kinds of handicaps.

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(with thanks to a good friend who passed on the link!)

Biozoon is a German company based in Bremerhaven. It was founded just nine years ago and had tremendous success with their first product. It’s now based in a 600m2 facility and also just opened a second factory in the south of Germany to provide a better service to the southern folk.

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There is such a range of topics in which to become an expert, it’s amazing.

An Saol definitely needs good music, but also a restaurant and the best food we can get for everybody living, working, and being there. Right?

Today’s German Music Tip
Duo Ohrenschmaus, Geht en Mann durch de Wald.
You’ll need a bit more than 15 minutes to watch this. But this is worth it. This is so absurd it’s unreal. Imagine a show like this in any other country. Impossible.
What’s hot
Music and Food
What’s cold
Tasteless anything
The German word/phrase/verse of the day
Schirri (think: FIFA)