It’ll have to be another short post tonight. One reason is that whatever is supposed to be easy with an Apple Mac when you migrate to a new machine turned out to be really complex when I tried it today; I’m still using my phone instead of my laptop to write this (remember when phones were used to make phone calls?).

The other reason is that Pádraig is keeping well. With a good friend from Ireland visiting over the weekend, as well as his older sister.

He keeps trying to make a real extra big effort to talk, say things that are easy and simple for us, complex and difficult for him. Of course, we have to be careful not to be over-enthusiastic, but we have no doubt that he is trying to respond to people who are talking to him

Tonight, when we left, he was so close to being himself, handsome Pádraig, saying ‘slán’ to his friend and family when we left. We are so sure he did. No doubt.

And this is just the start! Right?

Upgrading my laptop – it’s going to take another 25 hours. Don’t ask me why! I hope that some miracle will be happening during the night and it’ll all be done by tomorrow morning.
We’re just back at the apartment after a nice meal in town celebrating 29 years together (it’s more like 34 years altogether:). When we were out we talked a lot about what happened today when Pat went in to Pádraig and then myself: we are convinced he said ‘hi’ and ‘Hello’; and when Pat left him, he said ‘slán’ – with a. very weak voice, but nonetheless!
Writing this on my phone – was ‘t even sure whether that was possible an hour ago. But it’s slow. So I’ll give up a and go to sleep – an early night, for a change:)
Hi and slán!

Tonight, 29 years ago, would you believe it, I was sitting with two German friends in the house of two friends in Firhouse (I think) who had vacated their house for us. We were following the ‘book’ on how to organise a wedding in Ireland. One of the rules in the book apparently says that the groom has to spend the last night before the wedding somewhere with his friends. I’m say ‘apparently’ because I have never read or even seen this ‘book’ and have always believed what my Irish family had told me about Irish weddings.

Sutton Castle on the outskirts of Dublin where we got married, 29 years ago tomorrow.

Another ‘apparent’ rule, I was told, is that Irish women retain their maiden name after they get married – which causes a lot of confusion in Germany where Pat is called invariably ‘Frau Schäler’, which she finds really annoying, but has decided to tolerate rather than to fight it:)

Pat and I met 34 years ago and it took us just 5 years to make up our minds.

Neither of us would ever have thought that we would find ourselves one day where we are now. We would never have thought how important our relationship would become to us when facing life.

Pádraig was getting back to ‘normal’ again today. We sat him out in his wheelchair, he ate a bit, he cycled on the MOTOMed viva!, I shaved him, Pat cleaned his teeth. Whatever is ‘normal’ has changed but we will have to find some level of ‘normality’ at some time in the future. Life will have to become more predictable. It’s when you feel at the mercy of the gods who play their cruel games with you merely mortal soul, entertaining themselves watching you struggling, throwing at you challenge after challenge, that you wish for calmer seas.

We had conversations with two social workers, one in the Hamburg housing unit, one from the Schön-Klinik. They were the kind of conversations where I breath in, and out; in, and out. When I feel empty and horrified.

Tonight I’m thinking about my two German friend, one dead 17 years now. About the plans, the hope, the dreams, Pat and I had. Sitting in a kitchen, close to midnight, in Hamburg. Writing. About what.

I had almost forgotten about it when I got the call from the lady working for the “Sanitätshaus”. They do exist in Ireland too, the “Sanitätshäuser”, I think, but they function in a different way. In Ireland, they just sell stuff: wheelchairs, walking aids and he like. In Germany, they come to the hospital, assess the person who needs the ‘stuff’, they source it, and they organise all the paperwork with the health insurance, the public health insurance, would you believe.

She called because we had an appointment with a rep from a company that sell shower and toilet chairs. I had met him at the fair in Düsseldorf and now he was coming to the Schön-Klinik to demo the chair. For Pádraig. Isn’t that amazing. So we spent about half an hour checking it out, thinking about the different support ad-ons Pádraig would need, measuring it, taking pictures as a reminder.

Then I noticed that Pádraig’s room, just a few metres down the corridor got very busy. Doctors, nurses, equipment. So I went down to the room. They had taken a routine EEG and a junior doctor had noticed some irregular brain activity. She then called the senior doctor who confirmed that there was something undesired going on that was not (yet) visible by observing Pádraig, but it had started in his brain.

It was back to a drip, a third anti-seizure drug, and an upping of the anti-seizure medication he had already been on for some time now. It was a bit of a deja vu. Almost exactly two weeks ago, after almost exactly the same number of days after day one of the ‘wake-me-up’ drugs, the injured part of Pádraig’s brain was going into overdrive. It was good that they discovered this early enough this time and were able to avoid another trip to the ICU.

Pádraig’s senior doctor came in then a bit later and explained that this was more than likely the end of the drug ‘trial’. He believes, and I kind of agree with him, that it was good to try a second drug after the first had caused the problems. But trying it a third time does probably not make that much sense.

What he is going to do now is to propose to the surgeons in the UKE to try and fix his head bone that hasn’t grown together as we had hoped. And, by the looks of it, that’ll be that.

I had an empty kind of feeling tonight. The end of something. The beginning of something else. Into the wild.

I blame traffic control. So do Ryanair.

On the other hand, I’d say, and, obviously, I’m not a pilot, I’d say a Boeing 737 ain’t like the Picanto I’m driving (on loan from the family). They’re kind of big and have flashing lights all over them. So even early in the morning, on a runway, you’d see one – wouldn’t you.

Well there were two Ryanair pilots who obviously missed each other and got their wings clipped. Literally.

It meant we all – that is everybody who was supposed to leave Dublin airport on a plane this morning – waited for the best part of an hour until these two planes were toed away. Read all about it.

When I arrived eventually in Hamburg it was almost noon. I managed to do some work that had to be done and then met my German family (sister, brother-in-law, niece, and her daughter) to go with them to visit Pádraig. They had come up for the afternoon and then drove back home. It was nice to see them. I’m sure that Pádraig also really appreciated to hear their voices and feel their support.

Today was the fortnightly (or so) meeting with Pádraig’s doctor. It is really helpful to have a good, calm, sit-down conversation about what is going on. Unfortunately, Pat couldn’t be there with me, but we had prepared the meeting together which really helped. They are going to keep Pádraig on his current medication until around Sunday and then increase the drug that might ‘encourage’ him to interact a bit more than he has done so far. We should see over the next 2-3 weeks to which extend he reacts to it and whether it will make a positive difference.

Here’s the link to “Róisín” from the TG4 Player, in case you haven’t seen the programme yet:)

Just before his final exams in early 2013, Pádraig did a media course (film making) in Connemara. He learned how to handle a camera, how to structure documentaries, how to plan them. Each participant in the course was asked to come up with a concrete idea for a documentary that should highlight one particular persons life that for one reason or another had dramatically changed.

I had to think about this non-stop when Maria and I were driving up to Connemara to the studios of TG4, the Irish language TV broadcaster. I also had to think about Pádraig giving out about those ‘people’ who had been living for decades in the country and didn’t speak Irish – he didn’t have to point the finger at me, it was clear who he was talking about:)

So here is my promise:

The Connemara coast this afternoon, with a mini twister about to hit land.

learning Irish will be one of my top priorities over the coming years. Things are a bit busy right now, but I’m sure that some time in the not too distant future they will calm down a bit, and I will do it. Not that I hadn’t tried before, but I’m not going to give up that easily – and I’m sure that there’ll be plenty of people out there to lend me a hand.

The programme that we had been invited to is a weekly programme called “Róisín” – you can look it up on the TG4 player (once today’s edition will be up, I’ll link to it; it’ll also be on the air again tomorrow in the early afternoon). Róisín herself is one of the most kind and generous people you could find, and you will see that if you check out her programme.

Maria talked about Pádraig and how our family is trying to cope. Roisín herself highlighted our plans to establish An Saol as a house for persons with severe brain injuries who have no place to go to other than nursing homes, unless they can be looked after by their family at home. If you have elderly parents or are elderly yourself you know that nursing homes are not exactly popular amongst elderly people. They are even less suited for young people with severe brain injuries.

So, we were very happy that we had the opportunity to highlight not just Pádraig’s case, but also the widely recognised need to establish An Saol. If you are into Twitter, check out @RoisinTG4 and #blogawardsie.

Pádraig’s day today was as straight forward as they come. He had a MOTOMed tour d’Schön session, he was out and about on the roof garden, and some pureed food – not much, but enough to get a taste and to keep practice his swallowing. So far, he seems to tolerate the new course of the new medicine ok. No visible or noticeable reaction so far, in either way. I guess, it’ll take a few days to show some effect. Let’s hope it’ll be a positive effect this time around.

The days seem to get longer and the nights shorter – more like spring than autumn, really. It’ll be a very early morning tomorrow, and it feels already like a late night…

So tonight was the night of the Blog Awards. Hospi-tales was short-listed in three categories (health, personal, and best blog post). Pádraig’s An Saol had been shortlisted one year (he was around 16 then, I think), and I remember how excited he had been about the whole thing: his podcast in the shortlist! Tonight, in a way, he had a second go at this.

Maria was generous enough to come along with me. Together we set off into the sunset towards Clane in Kildare. Not sure whether you have ever been in the Westgrove Hotel there – it’s huge and looks like as if it was mainly used for larger parties of young people who wanted to spend a night having a good time.

I can’t remember when it was the last time I felt so out of place. Bloggers seem to be a certain kind of people and the one who met there tonight probably were the hard core. It was a night to remember. Strange, weird, and – in its very own way – wonderful. You might have seen following #blogawardsie on Twitter what happened throughout the night and who won. Hospi-tales did not win a first prize – but it has been incredible to see it as a finalist in no less than three categories. Most of the blogs that won were about fashion or food – fun stuff. Hospi-tales isn’t for a fun night with a drag queen as MC – who couldn’t say a word in Irish (couldn’t even read the names of the blogs with an Irish name) and made jokes about UVF pipe bombs.

It’s great to have a few pictures of the night – that way I won’t wonder tomorrow, whether tonight was real.

Pádraig is doing ok in Hamburg. The night nurse said that they had to suction him, remove the speech valve and use a “feuchte Nase”, and give him oxygen, although only for a short time – all of which is a bit worrying. For months, this had not been necessary (except last weekend which was a special case). It’s also strange that this never happens when we are there, nor generally during the day. – We were wondering, should we stay a night or two with him, just to see whether we can work with him so that he doesn’t need either oxygen, nor a “feuchte Nase”?

It’s late and time to go to bed. It was a busy day today. A lovely night out with Maria.

She and I will be on Roisín on TG4 on Monday evening. – Watch out for us!