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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?

Standing

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.

IslandState

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).

imagesHe 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!

Loud

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.

imagesI 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.

 

Spuds

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What do you think, when you hear that word: spuds?

Childhood dinners with potatoes, vegetables and meat in the pre-pasta and pre-jasmine-rice days?

The potato blight, famine, emigration?

Home??

We decided to start experimenting with ordinary food and see how Pádraig would take it. Today was potato day. For the first time, and this was really exciting, Pádraig did what the speech therapist has been practising with him, but he did it in a ‘real-life’ situation: he moved his tongue around his mouth to look for this sticky bit of mashed potato, mixed with some fresh broccoli. He did this really really well. Yoghurt is easy. Mashed apple (Apfelmus) is easy. Mashed potato is difficult. And he managed really well. It’s still a bit boring and simple, the menu – but if we keep going like this, we’ll get to more interesting stuff soon. Food is so important, not just for nutrition, but also for taste, texture, awareness.

I said ‘good-bye’ to the old apartment in Forbacherstraße over the weekend, cleaning up the remainder of what we had left behind and getting it ready for the hand-over and the Wohnungsgenossenschaftsübergabeprotokoll which we will have to fill in. It was a sad ‘good-bye’. It made me think of the time, in December of 2013, 2013!, when we were wondering whether it was worthwhile renting an apartment near the Schön-Klinik. When we thought, well, a couple of months and all will be different. When we thought of a fast recovery, with the right treatment and care.

The hope is still there. There has been, in the grand scheme of things, significant progress. But it also has been a lesson in humility, in learning to accept life in all of its different shades and colours.

Pádraig now lives with us. There are a number of things that will need to be sorted and for which he will need to go on short hospital visits. He is getting stronger, much more alert, he is communicating better, there haven’t been any significant infections. And the tracheostomy is gone! I am imagining our life together once the ‘dust’ has settled. And sometimes, some times I feel we’ll have unbelievable fun together, with him, with you: dreamboaters, wanderers, explorers, friends.

PS: Anymore people spotted running anywhere aimlessly? Just a bit more than two months to go to the Hamburg Marathon!

 

Gradam

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.

imagesMTonight, 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:

Screen Shot 2014-11-29 at 23.27.17He 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.

Slow

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.

imagesInstead, 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

Anymore

Unknown

 

 

 

 

 

 

 

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

5. Stock – Aufzug

I remember thinking one day: what a day! Today was like that.

We have 16 boxes of ‘stuff’ for Pádraig in the hall: from cushions to food. All delivered yesterday by our friendly DHL guy. Today, there were longer visits and conversations from carers who wanted to talk. The “Sanitätshaus” came in and brought us our very own (on loan) MOTOMed, took away the ‘display model’ we had had so far, and brought along a specialist in custom made “gadgets” advising us on options with baths, wheelchairs, and lifters. The physio came in for an hour. So did the speech therapist. And I had a class at 12 noon. At three, one of the carers helped me to get Pádraig out of bed, into the wheelchair. I washed his hair, let him have a go at the MOTOMed Viva2 bike/leg AND the arm trainer! Then I made and gave him something to eat, cleaned his teeth and at 6h30, together with a carer, put him back into his bed.

I feel dizzy writing about this…

Pádraig is finding himself, I think. There is less movement in the apartment than there was, less people coming and going. (Thankfully, today was not a typical day:) It is still difficult for him to do what he is doing outside of the bed: “cycling”, eating, drinking, moving,… But he is managing much better than he used to. He is also sleeping (more or less) well during the night, with just a few interruptions. He and us are not there yet, but there is ‘movement’.

imagesThe DHL man came again today. With just one package this time. When he rung the bell I answered and told him to come up to the fifth floor. When he got there he said that yesterday, someone had just opened the downstairs door, but had never told him where to go. He had had to park the van on the other side of the road, had to take out all those boxes, some of them being so heavy that they broke, and then work his way up the hallway of the apartment building until he hit the last floor. At that point, he remembered, he was pretty annoyed. Please, he said, please teach your visitors, even if they never learned German in their lives, to say: 5. Stock, Aufzug!

 

Aschermittwoch

Why am I writing about “Aschermittwoch”?

Apart from the obvious, I was born on Ash Wednesday. There is a quite famous German carnival song called “Am Aschermittwoch ist alles vorbei” meaning that on Ash Wednesday, it (=carnival) is all over. I have always asked myself: was my birth on that day, when “it’s all over”, really the end, or was it, instead, the beginning of something new? Mind you, and on the face of it, the beginning of a long fast doesn’t sound like much fun.

imagesYou would give away your age if you admitted to remember the Taoiseach (or: prime minister:) of our country to enter the chamber of the Dail (or: parliament) with a big black mark on his forehead. It always happened 46 days before Easter and it was on the first of 40 days of fasting (no fasting on Sundays!). It meant ….

None of that today. No more black ash on the Taoiseach’s forehead. People are still fasting during lent but many are quick to point out that they are not doing it for religious reasons.

When I came back to Pádraig today, I felt so good, you wouldn’t believe it. There’s something going on here that I don’t fully understand yet.

The coming days are an opportunity for reflection, I guess.

I’ll take it.

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