Pádraig would (probably) not mind me saying that he is the person in our family with the biggest hunger and thirst. Well, he is the tallest person and he needs it. Come dinner time, there was always a real run on the food. Because he was really hungry!

The Chefarzt has agreed: we can now lift Pádraig out of his bed, into the wheelchair, and back into bed all by ourselves! This is really very good news because not only will it decouple him sitting out and staff being available to help, it will also give much more time to the therapists to do even more exciting things with Pádraig, like sitting him up on the side of his bed (as he cannot do this himself, he needs lots of help and support to do it), or standing up in the tilt table. Today already, they did really great work with him: moving his arms, hands, and fingers; and helping him to comb his hair. Imagine what a feeling that must be to lift your hand, your arm, above your head and comb yourself! Again, Pádraig cannot do this by himself, but needs someone to lift up his arm and hand; but the feeling of all of this going on must be phenomenal!

Pádraig is also continuing to eat. Someone told us to try Froop, something like a yoghurt with fruit jelly/flavour. And guess what? It was a huge success. He would have emptied the full tub, but we thought we’ll take it easy… We are already thinking of preparing a little menu plan with a really soft cereal in the morning (like ReadyBrek), something nice at lunch time, and a more savoury dinner. At the moment, he is mostly on the hospital food supplies, which aren’t that bad… Again, today we were again overwhelmed by the attention and the kindness of the staff who brought in not just food for Pádraig to eat, but also a few biscuits and fresh water for Pat and myself. It was so nice!

I also realised one really incredible, and yet so obvious implication of being fed through a PEG where the amounts are set to a certain level that is being maintained day and night. Basically, when you are on a PEG you are ‘eating’ non-stop – meaning that you actually don’t ever feel hunger or thirst! Imagine, never having felt hunger or thirst for a year – but having a constant feeling of “neutrality” in relation to two of the most basic instincts we have. – Here’s a thought: one day, the tube feeding will have to stop, maybe for an hour first, to return this feeling to Pádraig. Can’t wait.

Today’s Music Tip
Rosenstolz, Wir sind am Leben.
What’s hot
Hunger and Thirst
What’s cold
Not feeling hunger or thirst
The German word/phrase/verse of the day
Essen und Trinken hält Leib und Seele zusammen.

We had the idea that Pádraig should have shoes. You know the kind of shoes he was wearing until the fell apart, Vans canvass shoes. We had brought his old pair to Hamburg, washed them and then discovered that they really couldn’t be safe. So we went to vans.com and ordered a brand new pair. Should be here in 4-5 days. We didn’t tell him. It’s going to be a surprise.

Speech-Eat-Lift. There were a few surprises for us today too. Wednesday is the day of our weekly meeting with Pádraig’s speech therapist. And guess what: she decided that since Pádraig had managed the 10-12 hours/day speech valve so well, he should try to have it on 24 hours. For about a week if it worked out. And then to see. It was a real highlight, something we would not have expected just some weeks ago, and a real great indication that some things are beginning to move. The speech therapist also decided that it was time for Pádraig to eat something; as on previous days, she arrived with this lovely strawberry ice-cream for him. Watching him eat it almost made me jealous: ice-cream on such a hot day, it must have been heaven. And then she announced that from today on, it was ok for us to give Pádraig something to eat ourselves. Semolina, yoghourts, jelly, anything really smooth and easy to swallow. Can you believe this? On the speech valve day and night, and eating whenever he feels like it? – And here comes the last bit of real good news: we have the ok from everybody, except the Chefarzt, to lift Pádraig out of his bed, into his wheelchair and back; hopefully, he will agree one of these days. Isn’t that great. It’s another bit of progress, I never thought would happen. – What a day this was!

There is a bit of pressure mounting to get Pádraig out into the fresh air. The roses in the famous rose garden are mostly gone by now; not even a strong German rose would be able to survive this intense heat. But he needs to breath fresh air. Smell the grass and the bushes. See the sky. Feel the wind on his skin. Hear the birds singing. Watch the famous Schön Klinik bunnies running away from the human visitors. What it apparently needs to make that happen, is that the right people are there at the right time of the day, when it’s not so hot outside, or a day with a ‘normal’ temperature.

With a bit of luck, his new pairs of vans will have arrived when that day arrives.

Hamburg is really hot these day. We are probably only surviving this heat wave thanks to the really great care of our friends in the Schön Klinik, and especially a big fellow with a great heart! who keeps us going with a steady supply of water (and the occasional yoghurt:).

We are very close to become ‘certified’ in moving Pádraig out of his bed and into his wheelchair. We’ve done the theory, we watched, we did trials, and then the practicals. Now, we just need the ‘ok’ from the Chefarzt. Us taking over this task will allow the therapists to concentrate on stuff we’re (not yet:) so good at: tilt table, sitting up (with loads of support) on the bedside, and other cool things.

Pádraig is making really good progress: the speech valve is now a given, all day, from early morning to the time we leave at around 8pm. He continues to eat some tea spoons of pudding, yoghurt, and ice cream which he really seems to enjoy. His speech therapist has really done a great job and is pushing the issue along – our understanding is that he will, one day, just keep the speech valve around the clock, and if all of this works, eventually the tracheostomy will go. What a difference that will make!

What follows are some thoughts on Principle #1 for An Saol – Life with Severe Acquired Brain Injury. Let me know what you think, and what you believe the other principles should be!

Principle #1: Never Give Up
People with a severe acquired brain injury (ABI) often get an uncertain prognosis by their doctors. Imaging (CTs and MRIs) and EEGs only show the extend of the damage to the brain, but they don’t give certainty when estimating the chances of recovery. There is still a widely-held view amongst health professionals that the “brain heals itself” and that there is nothing they can do to support that healing process. In many cases, this leads to a situation where patients are just being ‘kept’ in an institution, often in an acute ward if their condition requires frequent medical intervention, or in a nursing home once they are physically stable. Staff in these institutions often have no or only very limited knowledge of the care and therapy required by these patients. Adequate and timely early neurological rehabilitation is not offered at all or only in very exceptional cases and for a limited amount of time. There are still echoes around of the ‘hospital for the incurables’ and in some countries, the medical profession is even discouraged to help these patients by their medical councils. – Parents, families and friends of patients with severe acquired brain injury do not share this view. They know better. They know based on their own experience that their brain injured loved ones never stop to get better. They know that their loved ones need all the support they can get on their journey to recovery. They cannot, they will not, and they have no reason to ever give up on those who need their support, energy, and positive outlook. And they need to be joined in their efforts by society who has a moral, ethical, and legal obligation to help those most in need.

Today’s Music Tip
Maya Saban, Das alles ändert nichts daran. Two really good looking young people wondering why they split up, given that they are really missing each other. Agreed. It’s hard to understand…:) Du fehlst mir!
What’s hot
Hospitals without air conditioning:)
What’s cold
Hospitals with air conditioning
The German word/phrase/verse of the day
Nur wer gegen den Strom schwimmt, kommt an die Quelle.

When we were in Cape Cod Hospital, trying to get Pádraig home, there was an endless litany of things to get, things to arrange, things to find out about, things… One thing that was really important was to find him an admitting consultant, and then a free bed in ICU. Through the help of caring friends, we managed to find a consultant that was happy to admit Pádraig to Beaumont Hospital. Now, how do you find an empty bed in an Intensive Care Unit that the hospital would keep empty for at least a day, the time we needed to get the special air ambulance to Hyannis Airport, get Pádraig on board, and fly him to Dublin? When we rang ICU admissions, they were checking, and checking, and checking. We heard that there was another patient expected from Thailand who was to be admitted first, but then news came through that his transport back home to Ireland was delayed. So we got the go ahead to bring Pádraig home.

A few days later, we met the family of Robbie Robinson in the ICU. Robbie had been brought back to Ireland just after Pádraig had arrived back home. There was an instant bond between our two families, especially between Robbie’s mother and Pat. All of us fearing the worst. Today, a year ago, Robbie died. And in an act of incredible generosity, Robbie’s mother said to Pat that she wished nothing more than Pádraig to survive. None of us will ever forget this. In this moment of greatest grief and desperation for a mother, she thought of the other mother’s son.

We wish, from the bottom of our hearts, that Robbie’s mother and family have found a way to deal with the terrible tragedy of Robbie’s accident and passing on. No parent will ever get over such horror. But there must be someone somewhere that recognises the unbelievable generosity and love by this mother who in her darkest hour did not give in to her own tragedy, but instead shared her love and hope with this other mother she had met in the ICU waiting room.

I had given up on ‘surprise’. Didn’t really want any more. Had enough.

But, what about this. I just got an email from a lady from Co. Donegal who said that she had heard about Pádraig’s accident in the journal.ie. Turns out, she also had studied Irish in Trinity College Dublin (TCD), and was Rúnaí of the Cumann Gaelach. She says that all of her kids speak Irish and that she has taught the language to many people since 2001. She writes, “Yes, Pádraig’s dream of having everyone everywhere speak Irish can become a reality!” Now comes the truly amazing thing: she wrote from Cleveland, Ohio, where she lives with her husband and Irish-speaking children.

I think it was when we brought Pádraid to Kentucky that we spent a few hours in Cleveland, one of the few cities in the US that has more ethnic Germans than Irish! During those long days of driving, Pádraig insisted in his nice but somewhat uncompromising way to play his music. It was all in Irish and he sang along with it. For hours. Carefully phrased questions, and then more forceful insistence on playing some of ‘my’ music for a change, were not really that welcome. Then, I got a bit annoyed – looking back, I now would listen to any music for any length of time; and only now have I understood what it then had meant to him, spending hours recording all these Irish songs and Irish versions of English songs, waiting for days and weeks for those days that we were driving – and then being asked whether we could listen to the Stones and Dylan for a change!

Beannachtaí ó Chleveland! – Still can’t believe it.

Pádraig had another great day today, sitting out in his wheelchairs and using the speech valve non-stop during the day. It is fabulous to see how his oxygen levels are so much better with the speech valve than they had ever been before. There is no suctioning at all during the day. Whatever there is in his throat, he coughs it up, and settles back down. This is such good progress! And there isn’t really any obvious reason for him not to use it around the clock, and then, eventually and if it all works out, to get rid of the tracheostomy altogether.

We were driving up to Tating to check on the post and other stuff, together with a friend who is visiting Pádraig. Just skimming through the local paper, he spotted an amazing headline about a drone causing surprise and anger on a Northern Germany Beach – not any beach, but one the Germans call FKK for ‘Freikörperkultur’ which is just another word for nudist beach. Who were those people flying the drone over the beach?  Was it the NSA now not just listening to Angela’s phone but also watching the German brothers’ and sisters’ most intimate and private affairs? They came up with some pretty lame excuse, saying that it was a drone rented by a building surveyor – yes, that sounds reasonable:)!

Today’s Music Tip
Pur, Wenn Sie diesen Tango hört. A song about a widow, who is lonely, watches a lot of TV, but remembers the good old times when she hears this Tango playing.
What’s hot
Speech valve all day
What’s cold
Suctioning
The German word/phrase/verse of the day
Aufregung um Drohne über FKK Strand

Second night in London. Second night with an internet connection that is so bad I almost cannot connect to this blog page. There must be an invasion of ETs that each night around this time decide to collectively call home. And block everybody else’s internet access.

It was kind of a strange day today. With people most of whom did not know about Patrick’s accident, which was good in a way. At times I had thought that everybody knows. How could they not? But the reality is, and it was good to see this reality, that this tragic accident does not affect everybody.

At dinner, we were talking about the work of interpreters and Jost, a friend, told me that he had interviewed the last surviving interpreter from the Nuremberg tribunal for a book he had written together with a colleague. That interpreter was a Jew who had lost all, all of is family during the nazi regime. They had all been killed, without exception. And then, he had interpreted what they had to say at their tribunal. Isn’t it incredible what people are able to do, what they are able to take, what they are able to cope with?

Pádraig today set a new PB (swimmers know what I’m talking about). He managed the speech valve for 12 full hours without any problem whatsoever. Almost to the contrary: he did not have to be suctioned during the day and his oxygen levels staid high. It’s yet another sign of things to come!

Big city. Bright lights. No internet.

“I can’t let him go. I can’t. There must be some way to bring him back. Oh, I can’t think about this now! I’ll go crazy if I do! I’ll think about it tomorrow. But I must think about it. I must think about it. What is there to do? What is there that matters? Tara! Home. I’ll go home. And I’ll think of some way to get him back. After all… tomorrow is another day!” (Scralett in ‘Gone with the Wind’)

Pat and I were talking about the past. School time. The panic in the kitchen in the morning, for everybody to have breakfast, to get this all important copy in the little shop on Dorset Street on the way to the bus stop, have you got money, headphones (you couldn’t get onto a bus without headphones!), where are my headphones, did you take them out of my bag, the letter to the teacher, getting the homework book signed off, all within 10 minutes, we have to leave, we are late, I have to go to the toilet. It’s a wonder we ever managed to leave the house and get to this bus in town that would take them to school on the South Side.

Those were the good times. But only now. Then, I didn’t always realize how happy we all were.

Pádraig today had vomited just before we arrived. Why, oh why? He was stressed by the whole affair, the suctioning that had preceded the little incident, and the clean up operation that followed. So there was no pudding today. BUT, there will be a full day of speech valve tomorrow if he is able to take it. And then another. And then around the clock. Which would be a big step forward. So fingers crossed. Never think about the set-backs. Never look at what went wrong. Never wonder about what if. Τα πάντα ρει one wise Greek philosopher once found out, everything moves, flows, changes all the time. Nothing stays the same. Tomorrow, nothing will be like today. Scarlett was right: After all… tomorrow is another day! And in every panic, in every disaster, in every tragedy, there are good things, there is hope, there are steps forward. Even if it’s hard to realise that at times. I’ll think about it tomorrow.

I am in London tonight and tomorrow, giving a presentation and talk at an event at LondonMet University. Hope to get internet back in my room, windows wide open, unbearable heat, noise and lights of the big city everywhere. Back early on Friday morning. Sleep won’t come easily… neither does the internet… there must be millions of ETs around here, trying to ‘phone home’ on Skype!

This day a year ago, Pádraig came back to Dublin, on an air ambulance, via Goose Bay and Reykjavik. With his head protected by a helmet tied to the stretcher with a silver duct tape, his bone flap on dried ice in a styrofoam container on his mother’s lap – so small was the plane that there was not other space left.

For the first time since his accident and our arrival at his bedside, in Dublin Pat was told to wait outside, to go home for the night, that she could not stay. A few hours later, I arrived, early in the morning, the same happened to me, I had to wait, was then allowed in for 10 minutes, and then I was told to leave. It was terrible. I could just not believe it. I became angry. Did they not understand? To me it felt more like a prison than a hospital. And, then, it turned out that Pádraig was the lucky one to have a room by himself, he was not put into the open plan ICU part. Open plan ICU. No room. Open plan!

Today, it’s hands on. No sitting around and waiting.

Having done our course in ‘How to change to a speech valve’ and having graduated successfully from that, we just started our second module: ‘How to lift Pádraig out of his bed and into the wheelchair’. Another few days and, with a bit of luck, we’ll successfully pass that test too.

Pádraig had kind-of-a-quiet-day, but with many hours on the speech valve and sitting out in the wheelchair. Compared with just a couple of weeks ago, he is handling this almost to perfection. His heartbeat is normal, so is his breathing and oxygen intake. I wonder, will he be ready soon to get rid of the tracheostomy?

Watch out for tomorrows edition of Seachtain! – Here is a sneak preview, including a translation, all thanks to the journalist! Thank you!

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A moving new poem has been written by a young Dublin woman in honour of her friend, Pádraig Schäler, who was knocked down in Cape Cod, USA, a year ago. As she reflected on the defining moment of that accident when Pádraig was left in a coma, she was inspired to write a poem.

“I read Pádraig’s Dad, Reinhard’s, blog every morning and no matter if it makes me smile or brings tears to my eyes, it is always a very important part of my day” she said
“I know that there are people all over the world just like me, our lives changed from that same moment, all of us together in this sadness. I didn’t share the poem at first but then I showed it to Reinhard, he asked me could he put it on the blog”

Ciara was in the same class as Pádraig in Trinity but she believes that she first got to know him properly when they were in the Cumann Gaelach together. She describes the former auditor of the Cumann as someone who was central to Irish language life in the college.

“You would miss him if he wasn’t at something, you would feel the lack of his presence. And if he was there…I remember someone saying to me once, “if Schäler is enjoying a night, you probably are yourself too”, and she was absolutely right!”

Pádraig is well known and much loved within the Irish language community, as a language activist, a writer, a broadcaster and as a friend. Hardly a week goes by without the sound of young visitors speaking in Irish to Pádraig, in the Schön Klinik, the hospital where he is in Hamburg.

Pádraig’s parents made the difficult decision to move him to Germany when they were told that he would have to wait at least nine months to get essential neurological rehabilitation treatment in Ireland. Ciara herself spent time visiting Pádraig in Hamburg and she said that it gives her great hope to see the doctors and nurses working hard to give Pádraig the treatment he needs.

“It was fantastic to see him. Although Reinhard does a great job describing his progress on the blog, there is nothing as good as being in the same room as Pádraig”

According to Reinhard Schäler, who writes everyday at hospi-tales.com, it is a slow process but Pádraig is recovering gradually. It is clear now that he can understand things and physically he is gaining strength. He can squeeze his parents’ and friends’ hands, move his feet slightly and communicate by moving his tongue to the left and right, a new method of communication to say “yes” and “no”.

There have been lots of events throughout the past year to raise money for Pádraig and the latest project his friends have started is “Amhrán do Phádraig” which is set to be launched next month.