Lazy Sunday afternoon – not for Pádraig!

Have you ever seen anything like it? Gives the idea of “going up” a whole new meaning!

He took it really well, but it was clear that we’ll have to do this a few times, taking it slow and easy, before standing up straight for a significant time will come natural to Pádraig again.

Why doesn’t get everybody one who needs it???

Pádraig’s new bed is something else. It’s so much more than a bed. He can lay in it, yes, but he can also sit in it and even stand. It’s really easy to use and, above all, it’s really long. I wanted to try it out today with Pádraig, to see how it would be for him to stand in it.

But I had got a phone call yesterday to say that my mother wasn’t well, so today I went down to see her and stay with her for a few hours. She really is not well and, in other circumstances, I would have staid with her. This time, that just was not possible.

I drove back to Hamburg, a trip of a little more than three hours, and I was listening to the noise of the wind and the other cars. My mind was wondering: what’s going to happen next? Is there anything left that could make life more difficult?

Can’t think tonight. Can’t write. Can’t even keep my eyes open. What’ll be next?

Between carers, suppliers of aids, doctors, pharmacists, court clerks and judges, therapists and administrators, Pádraig has been keeping a huge number of people busy. Today, it was “bed” time.

It took more than three hours and three people today to dismantle the old bed and set up the new one. The exchange of the lifter (for a week, just to see how it would work), got almost lost in an afternoon of people coming and going. Carer in the morning, followed by the physio, a short brake, speech therapy, and then bed and lifter exchange, before the late afternoon visit by carers let the day pass by in a flash.

The bed Pádraig got is a high-tech 2.30m especially made for him (because of the length) standing bed, together with a matching, especially made, 2.30m mattress. It’s an amazing piece of engineering. When I tried it out, it almost took my breath away. You wouldn’t think it but being lifted up from a lying position in bed to a standing position in one quick go is a huge challenge to your respiratory and coronary system

Pat arrived back to day.

No man is an island. But some own one. And some would like to own one.

Pádraig had this idea that we could buy an island and declare it an independent island country. Off the west coast. We even made enquiries at some stage and were surprised how relatively affordable it is to buy your own island (as long as you keep it small).

He was going to print his own money. Issue his own passports. Design his own flag. Decide who could enter. We were discussing the advantages and disadvantage of being in charge of your own country. In a way this could have been perfect: we could have stopped wasting our energy trying to convince people who obviously don’t want to be convinced of all these “really obvious” things that are just wrong in politics, society, or the economy.

Sadly, we never found out how exactly you declare independence. On a small island. Off the west coast…

Today, Pádraig and I went back to the UKE for an outpatient appointment. My idea was that it would take a few hours. In the end, it took most of the day. It was almost funny to see how he did not fit onto a trolley and once he was on it, and the trolley was put into the car, the car’s doors didn’t close anymore. In the end, we made it to the UKE and back. Both really tired… Also decided that from this coming Monday, we will work with another care provider… Tomorrow will be the big day for Pádraig’s big new standing bed to arrive. Can’t wait!

Do you like soft music and candle light? Or do you prefer action with the music up to a maximum? Or rather something in-between?

My few days alone with Pádraig started, again, at lunch time. There was a slight mix-up with the carers when one of them turned up at seven who we had not expected, and not at this time. In turn, one we had expected at three did not turn up. So I spend the afternoon washing and doing exercises with Pádraig.

We also listened to music. Really loud.

I realised that I do not now half of the songs on my phone. Even the ones I recognise, I don’t know their titles and the name of the singers. Which is when I started a little quiz with Pádraig – asking him whether he knew who was singing. When he indicated he did, I asked him whether singer A was performing (‘no’), then singer B and so on, until I mentioned the correct name – and he indicated ‘yes’.

We spent the whole afternoon having a log of fun!

Tomorrow morning, an ambulance will bring the two of us to the UKE for an outpatient appointment. Nothing big and nothing long. Fingers crossed.

Today’s German Music Tip
BAP & Hubert von Goisern & Klaus Doldinger – Für immer jung 2011
What’s hot
Loud music
What’s cold
Neighbours’ non-stop drilling, for what I ask?
The German word/phrase/verse of the day
Es langt.

Gradam Mobhí, the prizes given in Scoil Mobhi, introduced me to the idea of a ‘gradam’. Over the years, I found out that there are all sorts of grandmas. At least in primary school, I think there are gradams for everybody. Because everybody should be encouraged. In Germany, even in primary school, you have regular exams, you get graded, and if you don’t pass you repeat the year. A different kind of ‘encouragement’.

Today, Pádraig made it to the platform of Tonndorf Bahnhof, our local train station. What a first! We all went out for a stroll and to bring his two friends from Dublin who had been here visiting him over the weekend to the train. Life is getting more ‘normal’ every day.

Tonight, at 21h30, there will be a brilliant concert in Cork Opera House. The line up is the best you could get in Irish music and it’ll be broadcast live on TG4. And there will be a Gradam – a prize for the “Young Musician of the Year”. This year, this prestigious Gradam has been awarded to Maitiú Ó Casaide, “a young uilleann piper with an impeccable musical pedigree and a very bright future“. It was Maitiú who had the idea and organised the recording of “Amhrán do Phádraig“, a Song for Pádraig, last summer.

The Gradam web page says about him, among other things:

He has toured internationally with Rian, a contemporary dance show featuring Liam Ó Maonlaí, Eithne Ni Chatháin, Peter O’Toole and Cormac Begley and eight dancers from around the world. The musicians from this show have since released an album December 2014 called Ré. He also oversaw the production of Amhrán do Phádraig a fundraising album, also released in December 2014, for his friend Pádraig Schaler who acquired severe brain injury in a bicycle accident while working on summer student visa in the USA in 2013. The album which includes Dreamboat, a bilingual song Maitiú composed especially for him.

Here’s a Dreamboat sailing down the River Lee to the Opera House tonight. Maitiú, you have been a great friend. You brought your pipes down to Hamburg, to the hospital, a couple of times and played the most beautiful tunes for Pádraig. Dreamboat and Amhrán do Phádraig have inspired so many people, music and songs that transcend your friendship with Pádraig and go to the essence of what of what life is all about.

Watch the video, listen to the Dreamboat sailing down the stream, and order your copy of this phantastic CD.

Late morning, slow start, taking it easy.

Slow wash, getting to move hands, arms, legs, and feet. Stop. Talk. Listen to Saturday morning radio. Miriam Richardson. Never knew she hang out with Bosco. Shave, wash again, after shave, smell, feel the fresh air coming in, wake up, feel alive.

No carers on Saturdays, only for a quick visit in the evening.

Instead, a lovely visit from the two Dublin friends who had arrived last night. It is really great to see how well they get on with Pádraig. There are lively conversations ‘as Gaeilge’ and the occasional question about how I’m getting on with my efforts to learn the lingo… It’s life, fun, banter… not imaginable in a hospital with gowns and face masks taking away individuality, making them look almost the same even to each other.

Listening to the News: girls saying they were going out to visit friends, instead went off to join IS. Everybody is surprised. The Maltese say the L.E. Aoife, offered by the Irish Marine Force to Malta as a present, say the ship is “junk”. Waterford has offered her a place in a new maritime museum. No surprises here. In German news: Der Spiegel reports that new helicopters ordered by the German Marine will not be able to fly above water. So much for German efficiency.

Time. No issue. You notice things when you move slowly.

Today’s German Music Tip
Mark Forster, Ich trink auf Dich mein Freund
What’s hot
Saturday mornings, taking it easy
What’s cold
Hurry
The German word/phrase/verse of the day
Rausgeputzt

I close my eyes and go
To places I know and places I don’t
Some that exist, some that don’t

I go back there when I close my eyes
Bring him with me and we explore
Worlds we don’t have access to anymore
in real life

The world keeps turning, time keeps passing
Babies are born, get to their teens
Getting older loosing their dreams

I never believed in the real life
Never knew what was real
Never wanted to loose my dream

We are travellers we are explorers
We transcend what restricts others
We don’t have sorrows, no bothers
anymore