Can you believe that this is the 1st of August? The first day of autumn? In my mind it’s only yesterday we were sitting outside in Beaumont, in the early autumn sun, believing that the next four months would bring about a big change. Looking back, we were right in one, but wrong in another way.

Imagine. Lights going on and off. The door of your room opening and closing and opening again. Muffled but familiar voices in the background. There is the odd word you catch and understand, but it’s hard to grasp fully what is going on. Shadows on the ceiling of your room. You can feel people touching you, moving you around a bit. More shadows, at time, you recognize some of them, they are not here for the first time with you. Does this sound like a scene from a horror movie? This morning, I read about a new computer game of which the reviewer said that it was very different from anything else he had ever seen. The game is one of those where the players take on a specific role, only that this time it’s not that of a gangster driving a fast car, or that of a soldier trying to free one of his comrades taken prisoner by cruel guerillas in the South American jungle – this time the player becomes a baby in its cod.

Today we discovered that mincing the food for Pádraig is not quite sufficient. It also need to be ‘liquidy’. He got a menu for next week with a few options to choose from – unless you require the most minced version, like Pádraig does, and then there is only one dish. To be honest, in his case it’s not so much a matter of ‘which dish’ but more a matter of the food just being very soft and easy to swallow. We’ll try to mix in a bit of hot water tomorrow and see…

Poker Night for Pádraig Schaler! https://www.facebook.com/events/478688752267844/?ref=2&ref_dashboard_filter=hosting

As many of you might know, our good friend, Padraig Schaler, is in Germany at the moment receiving excellent treatment in Hamburg. He has already taken many steps, but he has many more to take on his long road to recovery. And we are all here to help him on his way, in any way we can!

That said, one great way we can all help is through fundraising! Of course, there are very high costs involved in Padraig’s treatment, along with travel expenses etc. As a result, we are organizing this poker night to help raise money.

We invite all poker players (OF ALL LEVELS) to bring your sunglasses, hoods and whatever else you think is necessary in order to win!

We decided to organize this ‘Poker Night’ as Pádraig is a little bit of a gambler, many a game did he win and (mostly) lose, and I know it won’t be long before he’ll be saying ‘I’M ALL IN’ again : )

This promises to be a fantastic evening as it is seldom that such a collection of top poker players come together under one roof. We thank you in advance for your commitment!

Tournament details:

Pre-tournament training and talk: 7:00pm
Register: 7:30pm
Tournament kick-off: 8:00pm

Buy-in: €30
Rebuy: €15 (one rebuy each)

For Texas Hold Em’ rules: http://www.texasholdem-poker.com/beginnersintro

For tournament prizes:
1st Place = €180 + (€40 Hailo credits)
2nd Place = €90 + (€40 Hailo credits)
3rd Place = €60 + (€40 Hailo credits)

Worst beat = €20 in Hailo taxi credits
Worst player of the tournament (biggest donk) = €20 in Hailo taxi credits
First person out = €20 in Hailo taxi credits
Luckiest player = €20 in Hailo taxi credits

The ‘Wishing Well’ on Newtownpark Avenue, Blackrock has kindly agreed to host this event, and some snack finger food. https://goo.gl/maps/Cu4Ka

Further information on Pádraig’s accident can be found here: http://caringforpadraig.org/as-told-by-his-family/

Reinhard, Schaler’s dad writes daily updates here: https://hospi-tales.com/

Start practicing 😉 Pádraig abú! As an aside, if anybody uses Hailo, enter the code schaler2014 (first time users only) to get €10 off a taxi with Hailo. Tournament sponsored in part by Hailo Ireland & The Wishing Well.

Tonight, there is no shortage of things to talk about. Boa eh!

You know, Pádraig is on full board, all inclusive. Three meals a day, all you can eat. All you can drink. Room service. So today we went all out, we decided to get the menu and go for it: we ordered the whole lot! Well, one meal. We asked for the pureed dish which, when it arrived, looked a bit like what our friends across the water (thank God we’re surrounded by water:) call ‘bangers and mash’. Turned out as proof for the saying that not everything looks like what it is. This was ALL pureed. The sausages were just very finely minced meat put back together to look like sausages, the potato cakes were mashed potatoes, and the third item was like a minced vegetable cake – all served with a lovely sauce. A meal for a man. He loved it. Didn’t quite manage to finish it (for from it), but he had a go! And Pat and I really started to admire the chef!

The biggest news today is (no, it’s not WOA:) – that Pádraig got a new ‘Kanüle’  and not just a new one, but a different one: much shorter and without the balloon that served to block the airways into the mouth and nose. It’s the last step (maybe the second last?) towards ‘dekanülierung’, taking the tube out all together, we were told. The only reason, as far as we know, stopping the ‘Dekanülierung’ now is that when he puts his head back, he has problems breathing, especially through his mouth. Which is something I have too. I pointed that out to the therapists, suspecting it might be an anatomical difference, rather than a consequence of the accident. They want to take it step by step, and do this with every possible care, just in case it’s not anatomical but lack of muscle somewhere in his airwaves or throat or chest. I am sure we’ll find out. In the meantime, Pádraig will get special training for all and any muscle possibly involved in breathing.

I had forgotten to mention the huge number of cars on the motorway the other day heading for Wacken. What? Wacken? WOA. It’s the worlds biggest open air heavy metal festival. It takes place in a little tiny village between Hamburg and Tating (closer to Tating than to Hamburg), in the middle of nowhere. It’s so famous, it attracted a Korean film maker to do a documentary about it and there are endless hours of videos on the web about it. You need to wear black, preferably have a bit of a belly, drive a Harley, and wear leather with a head band covering your thin but long hair. For years, I’ve been looking for someone, anyone, to join me going for the 3 days over the first weekend in August to Wacken, but they all chickened out. (I also tried the Karl May Festspiele in Bad Segeberg, equally unsuccessfully – which made me think that it might have been the company rather than the event that made the difference:) The highlight of the festival is the grand opening, by the marching band of the Wacken Voluntary Firemen. Pure Genius! Where but in Wacken Open Air – W:O:A?

Sneak preview: The coolest and darkest, the most dangerous and most RISKY, the one with the highest stakes, the one not to be missed if you love the risk and enjoy to win! Poker Night for Pádraig Schaler! Saturday the 23rd of August at 7.30pm https://www.facebook.com/events/478688752267844/?ref=2&ref_dashboard_filter=hosting – More details tomorrow!

Today’s Music Tip
Wacken – Ein Dorf sieht schwarz. A documentary by the NDR (North German Broadcast Authority). It’s in German, but the language of this movie is universal: you’ll need an hour and a half, good headphones (or an empty house and good speakers:), loads of beer, and no inhibitions.
What’s hot
Bangers and mash
What’s cold
Beer, literally
The German word/phrase/verse of the day
Boah eh!

I got up at 5.30 this morning. Funny that I managed to do this – I had tried for at least a week before and had always miserably failed. The plan had been to get run around the block just before breakfast, and before the heat. Man makes plans and God laughs (he must have had a great time last week, laughing at my plans). Today was different.

I got up at 5.30 this morning to go for a drive, this time not north but south, to see my mother who was 91 today. A bit more than a year ago, she had a stroke and is now paralysed on her right side. She couldn’t live on on her own anymore and had to move into a home.

I got up at 5.30 this morning to get to see her and leave before the guests were to arrive at the party in her honour my sister had organised.

During the three hour drive, I listened to the radio, and learned that it was this coming August 70 years ago that the population of Warsaw started the biggest uprising anybody anywhere had ever attempted against the occupying Nazis. Following this uprising, the Germans killed 200,000 people in Warsaw and destroyed most of the city: block by block, they blew up the buildings until nothing was left. 70 years ago, my mother was 21. I asked her whether she remembered. She said that, at the time, she had been in the south of France working as a nurse and substitute mother for young officers many of whom died on her ward, and consoling those U-Boot crews who did not want to go to see anymore because they knew that they had no chance of returning alive. Now, she is in this nursing home where she was trying (most of the time unsuccessfully) to get the intention of the staff because she wanted to introduce them to her youngest child, her only son. Then she asked me, using slightly different words, whether I knew what it meant to live in a place like the one she is living in. I don’t want my mother to be there but very sadly really do not have much to offer as a viable alternative. But I know and will make sure that Pádraig will not live in such a place.

All signs of an infection had completely disappeared today. He was ok to have is yoghurt, we sat him out in his wheelchair, he had a number of therapies, and – while I was away – Pat said that he was great answering quite a few of her questions using his tongue. He has been on the speech valve 24 hours a day since last Wednesday without any problem whatsoever. We are not sure, but it seems like he will have the tube going into his throat replaced tomorrow by a much shorter tube, reducing the level of intrusion quite a bit. We’ll see when we meet his speech therapist in the mooring, following by a combined physio/OT session!

By now you know that I got up at 5.30 this morning, it’s 11pm now here in Hamburg, and I’ll have to go to sleep.

Oíche mhaith.

I do like Mondays.

Mondays are normal days. After the bit of a panic over the weekend, all the markers are ok again. What looked like an oncoming infection turned out to be a false alarm, at least so far: Entwarnung!

When we went into his room today, he was sitting up on his bed, feet on the floor, back supported by a big foam square, shoulders pulled back by one therapist who was standing on the bed behind Pádraig (trying not to fall off:), head held up high by another therapist. It was amazing!!! The idea of him sitting up, on one side of his bed, with his feet down on the floor, is really incredible. They had tried this before. But this time we were able to see it – and seeing is believing, although it was really hard to believe my eyes. Wow! What a sensation this must be for Pádraig! I am getting back up! I am on my way! I am sailing! Dream Boat here I come! Nothing is going to stop me!

Not sure whether i mentioned that last Friday I received a call from a company who said that they had been asked to prepare and deliver a wheelchair for Pádraig and that they would be in touch again this week with details. When we asked in the hospital, no one knew anything about it. Could it be that this is German bureaucracy not working? Or will he really get a new wheelchair? To be honest, while there are a few things that need to get fixed on the wheelchair he has, it’s not bad…. Bad, however, are the news about the MOTOMed 2 racing bike – the manufacturers sent a palette and a huge box to send it back to repair. It has been broken for the best part of a month now, I can only imagine how long it will take to get it fixed. It’s amazing: with your PC you get next time home repair, with something as important as an exercise bike for patients in rehab it takes ages. (I think I might ring the company and tell them I am interested in buying one of their bikes, but have heard that their breakdown service is worse than that of the AA, or even the ADAC for that matter!)

The best news today: Entwarnung and Sitting Up!

There are loads of songs about days of the week by all sorts of music groups: some don’t like Mondays, others get Saturday Night Fever, Jagger couldn’t get over Ruby Tuesday, Lisa was Waiting for Wednesday, and Thursday was the day of the Pet Shop Boys. If I was to write a song about days of the week, I’d go for the whole weekend, killing two birds with one stone or Zwei Fliegen mit einer Klappe schlagen. You could put your money on it: something will always happen in our slightly limited world of Pádraig’s room over the weekend! Last time was a month ago. So it must have been about time for another bit of excitement. More about this later.

Last week, one of Pat’s cousins came to visit and brought with her a CD called Lúnasa (by otherworld) with some really nice Irish music. Today, I learned about Lughnasadh, the festival when the first cut of the new harvest was taken up the mountains and offered to Lugh or Lú. Many of Ireland’s hills and mountains were climbed around this time of the year, the end of July. As many other ‘pagan’ customs, this custom transferred into the Christian tradition; one result of this transition is what became known as Reek Sunday when, on the last Sunday of July, thousands of people – this year, there were more than 30,000 people – climb Cruach Phádraig or Croagh Patrick, the Reek. Last year, a whole big group of Pádraig’s friends joint this pilgrimage, some of them barefoot. It was one of the first of an endless number of incredible demonstrations of friendship, a sharing of determination, and a dedication of their energy towards Pádraig’s recovery.

From around midday, Pádraig’s temperature went up, his heart beat followed, but – thankfully – his oxygen levels remained great! The doctors covering this weekend are great. No panic, but paracetamol to control the fever, taking blood samples and an x-ray to find, or at least to exclude, the cause of the fever (if there is an identifiable cause). And they were successful: it didn’t take long and his fever went down again, and together with it his heart rate; it’s still a bit on the fast side, but that will hopefully fix itself as the temperature is going down.

There it was again: after a few weeks of amazing ‘firsts’, great progress on the speech valve and the eating, this feeling of uncertainty, panic, wondering whether these scares will follow Pádraig and us forever, the helplessness.

PS 1: Just got word from the doctors: the lungs look ok and the bloods are, while not quite ‘normal’, still ok. Let’s hope this time it was just a hiccup, the hot weather combined with sweating, maybe a slight lack or fluids, or who knows what… Doctors and nurses could not have been better this weekend! And of course, maith thú a Phádraig.

Finally – Some of Pádraig’s friends nominated this blog for the Blog Awards Ireland 2014. Just got word that the blog made it into the (very:) long list under Health and under Personal. I have no idea how this works, but it’s amazing!

Size matters. Not always, but at times.

Tonight was going to be the night. But the man, known to have friends in low place and due to attend the dance, hasn’t shown up. It’s quiet around Croke Park tonight. And tomorrow night. An another three nights. The biggest ever number of people due to watch a country boy sing, around 400,000 of them, will be roaming the streets of Dublin this week. Lost, as if tomorrow never comes.

Here is a secret. It’s also about the Southern States, not Tennessee, but its neighbour Kentucky, and about Pádraig’s swimming scholarship in a division 1 college, the University of Kentucky; about the faith of its head coach in Pádraig’s ability to really make a difference. The decision of the coach to offer him the scholarship was based, as I understand, on his great results as a swimmer; there was some really strong competition though with some other swimmers having delivered similar results. What made him stand apart was his size – tall people make fast swimmers, there was a lot of potential, with the right coaching. What eventually got him the scholarship, however, were his feet. The first day we spent with him on campus, trying to find his room, trying to find our way around – I don’t know how many people commented on his feet and how similar they were to those of Michael Phelps, in size.

So today, this was another step ahead. Another first. There really is no end, no end, to these ‘firsts’. Boots are made for walking. Shops didn’t have them, ordering online just took two days. Size 15. And sitting in his wheelchair, his feet reached the ground, and firmly claimed that territory! Step by step (mmmhhh), normality is coming back. Socks (we’ll forget for a second that they were white) and shoes (cool ‘Vans’) – where will the next step take him?

Third day on the speech valve, no bother. Another bite to eat. Apple and banana puree. AND: since we can now lift Pádraig in and out of the bed, the therapists had time to put Pádraig onto a tilt table which allows Pádraig to ‘stand’ almost upright. He hadn’t done this for a long time, so he was struggling with his blood pressure – but, like everything else, it’s a matter of practice. It’ll be much easier the next time, and the next, and so on. He’ll have to keep going!

Today’s Music Tip
Frieda Gold, Wovon sollen wir träumen. – “Ich bin mitten drin und geb mich allem hin – ich krieg’s nicht hin und fühl’ mich deshalb beschissen…”
What’s hot
Socks and shoes
What’s cold
Standing still
The German word/phrase/verse of the day
Bares (10 points to whoever gets this right:)

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.