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

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’.

The 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!

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.

You 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.

Tonight will be the first night that Pádraig will not be in the company of Pat or myself. Pat’s sister will be with him. I feel a bit worried and, at the same time, re-assured that this is possible and that it should, should not be a reason to worry about anymore. Isn’t that great?

Today I met and talked to a number of friends, some of whom I did not even know we had. They offered their help with getting everything here ready for the day that Pádraig returns and, possibly, with An Saol. With many people saying that he and us would have massive support from his and our friends and families. I have, to an extend, stopped making plans. We will take it one day at a time.

Today, Mary Walsh, the mother of Sara who was on Pádraig’s ward in Beaumont, also with an acquired brain injury, was on Today with Sean O’Rourke (who previously also reported on Pádraig’s case). Mary was talking about bringing Sara to a Therapy Centre in the south of Germany later this week. What she did say, but what was coming out loud and clear were two points:

1. There is no adequate care available in Ireland for persons with severe ABI.
2. If you want to avail of adequate treatment abroad, you will have to pay for it yourself.

Stop a moment and think, imagine you have a child. This child gets very badly injured. Now, under no, absolutely no circumstances would you abandon your child, never ever would you allow anyone to ‘store’ your child away in some institution with just a the bare minimum of care. – But this is what the State does: not only does it not provide adequate care. It happily lets you take over, it lets you do pub quizzes, car boot sales and other forms of fundraising until you have assembled enough money to move your child abroad for treatment.

Are the people in charge of this system not ashamed? Absolutely and completely utterly embarrassed? Does the possibility exist that the lack of care will never be addressed, if we decide to fundraise and then move our children abroad where they receive the treatment they require?

Meeting with the architect in the morning, followed by another work-related meeting, and then back to the airport and back to Hamburg. Can’t wait to see Pádraig again!

Hits and misses.

It’s the brilliant title of a CD set of one of my favourite singers who acknowledges that some songs are universal hits, and others mightn’t work the way they were intended to.

There are just two reasons to get up at five o’clock in the morning – one is going for a swim, the other is driving to Limerick. I didn’t go for a swim…

I was thinking of Pádraig, what it must feel like to be out of the hospital, out of the routine, and to be out on the street, to have a lie in over the weekend, to smell the dinner from the kitchen, to see the sun light, to hear so many different voice… I got a glimpse of what that must feel like today. Not having been out really for a few weeks and then being “hit” by things, by people, by air, by rain, and by the sun.

On the way back, I stopped by at a friends house and although I was really tired, it was so nice to see them again. How nice would it be for Pádraig to be closer to the people he knows, to the people he loves, the country, the language that are worth so much to him.

Tomorrow is another day, another day to work on change. Because change is what it’ll take to look after Pádraig and persons with similar needs to his.

Of course, it’s raining, back home, home is where your feet are, tonight, and for the next couple of nights, my feet will be in Ireland.

Before I left today, Pat and I were planning the next few days. It got so complex that, in the end, we ran out of time and I had to run to get the train to get the S-Bahn to get to the airport to get the plane, back to Dublin. This week, between the two of us traveling and a family member standing in for us with Pádraig for a day and a night, and organising some extra hours with the carers, I hope the week is going to work out without any major hiccups.

It’s the first time in a long time that I have left Pádraig recently. It is a very strange sensation, being away, doing things that are normal to others, but, now, very different to me.  On the plane I thought that we need to come to a point where this life, this new life, becomes every day life. Not a series of exhausting sleepless time warps or a succession of crises points. But – how, how can this ever become routine, ‘normal’, every-day? For him, for us, his family, his friends? What will be there, then.

Better take one step at a time…

There is some movement on the An Saol ‘front’. Some friends have ideas about how to get the land we need for An Saol. Some have ideas about planning and building it. There are also therapists who have expressed an interest. – Recently, I thought that An Saol could start with the provision of some services, even before the An Saol house has been built, such as physio, speech, occupational, and music therapy, or professional development courses for therapists, carers, and carers in the family.