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.

Few people would remember John Spratt. Do you?

Some years ago this day, we all went up to Whitefriar Street in Dublin, to the church where the relics of St. Valentine are kept by the Carmelites. It’s a magic place and the idea that the great Saint’s remains are there with us in the middle of Dublin ist just astonishing. On his day, today, the place is packed with those who still hope to find love and those who are afraid that they might loose it.

There were no cards in the post box for us today. It was much better than that: Pádraig’s friends were still here to visit him. It’s brilliant the way they have been keeping up their visits which are, I’m sure, not always easy to organise. It must be great for Pádraig to see and hear his old friends around, familiar voices, the updates on what is going on, who is doing what. For his friends, I am sure, it’s equally great to stay in touch, to learn how to spot the small but significant improvements in Pádraig’s condition and to figure out how they can stay connectd with him.

They brought a late and very unexpected birthday present which was really kind.

One of them also said he is going to join Cian and myself for the Hamburg marathon at the end of April. Our little international running Club is growing!!!

John Spratt, the great preacher, brought the remains of St. Valentine to Dublin from where he is now watching over all of us who love.

During the night of 13 to 14 February 70 years ago today, Dresden was bombed by the Allies. Several hundred thousand bombs were dropped on a city in two 15 minute night waves of bombing and further waves the following day. 25,000 people died. Most of the mothers in a maternity hospital died, most of their babies survived because they had been evacuated earlier. The bombing caused a huge fire storm in the city and was not aimed to destroy a particular military target, it was a blanket bombing, in the spirit of what they called a few years later ‘shock and awe’.

The Allies demonstrated their power, the Nazis used it as a demonstration of the evilness of the enemy.

The news today of the commemorations made me think of what is going on today in the Middle East, in Western Ukraine, and in North West Africa.

There are people being maimed and killed in the most horrific way every second of the day. They are people with plans for their future. And then life hijacked their plans and their lives. One minute they thought they were in charge of their destiny. Next. It all goes up in smoke.

“Illusion of control’ is what psychologists call the illness some people have, i.e. they believe they are in charge.

When I was thinking about how to illustrate is, I couldn’t think of a better images…

Today, Pádraig had a visit from three really good friends from Dublin. The first friends from Dublin visiting Pádraig in the new apartment! And they brought, well, Gummibärchen!

And – I almost forgot the best thing to tell you: yesterday, his (relatively) ‘small’ physio took Pádraig, sat him up on the side of the bed, feet on the floor, lifted him up and got him to ‘stand-up’ — no lifter, no nothing, just some great support from the physio. Over weeks had we asked whether that was possible and had always been told that Pádraig was too tall to make the standup trick work without mechanical support.

They never got it, even after 14 months and more of Pádraig’s birthday coming in: there are no limits to what is possible, nothing that prevents anyone from trying, and Pádraig, well Pádraig never took ‘no’ for an answer. He knew that he couldn’t control life, but that he could always make the very best out of an even very difficult situations bestellt. And he was under no illusion about the difficulty in doing this…

I haven’t been out for a few days and I don’t feel the urge to do so. The day passes around people calling to the apartment: speech therapist, physio, carers, doctor, even the pharmacy delivers medication to the door. Between MOTOMed arm (!) and leg training, foot bath, eating, drinking, hair washing, the days pass in a flash. The nights pass between short spouts of sleep, listening to breathes, turning around every 3 hours or so, checking the pulse, oxygen, time regularly…

I’m waiting for Pat, I talked to Pádraig’s friends who have arrived in Hamburg, the first to visit Pádraig in the new place. And there is no “Besuchszeit”, there’s no-one checking who comes when and stays for how long. There’s no need to wear gowns, not at home. And not, because the GP’s tests came up with an all clear. Isn’t it amazing: you leave the “isolation” room and it seems that you leave the germs behind.

Tomorrow will be a good day: with friends visiting Pádraig, Pat back in the apartment, and Pádraig in the middle of it all!

PS: Today is “Weiberfastnacht” – I still can’t believe the non-stop “traditional” Karnevalsfeiern on the TV. It’s all marches, uniforms, and a very special sense of humour!

 

Are you interested in diversity? Cultural differences? Alterity?

It’s easy and straight forward when they are big. The differences, I mean.

It’s tricky, when they are small. So small that you think there ain’t any.

So on the surface, the Irish and the Germans are pretty similar. Ok, Germans don’t have a sense of humour (or their very own one), they don’t buy rounds, they have ID cards, and their police force is armed. Irish buses are never on time, people cross the road whenever they want to (rather than waiting for the green man), and they insist in driving on the wrong side of the road. – But none of that is substantial. One would think.

There is another difference: Irish stop celebrating their birthday once they’re 21, Germans make a big deal out of any of their birthdays.

Today I had a sad day. I thought: all what I had planned, all what I had thought I would be doing, everything I had imagined just evaporated that day in June. None of what is going on in my life, in our lives, is anywhere near of that I could have imagined in my strangest dreams. I’m now an expert carer. I have learnt about hospital care in three different countries. I’m an expert (well…) in neurological rehabilitation. I know more than some of the experts about wheelchairs, lifters, beds, MOTOMeds, and many other “Hilfsmittel” that are essential for the care of someone who cannot look after themselves. I know where the money goes, where it is spent, where it is not spent, what it all costs, and why people get involved in care. None of that was even on my radar less than two years ago.

More. I thought I could do whatever I wanted to do. I thought I could influence the way the world goes, the way people act, the way we deal with each other. Now I know what it feels like to be told what to do, what is good and what is bad, what it feels to be at the mercy of others. So vulnerable, so raw, so desperate at times.

My sister and brother in-law were here earlier for a few hours. But now, I’m here with Pádraig alone celebrating my birthday. A big deal for a German, those birthdays. And Pádraig and I have never been closer to each other before. The most beautiful birthday present. This feeling. This connectedness. This understanding.

I’m a wanderer.
I wander between worlds, in and out.
I hear and listen and understand but
I don’t seem to be heard.
I’m a wanderer.

I’m an explorer.
I explore places in my mind and yours.
I get to places at the speed of light, at the blink of an eye but
I can’t seem to find what I’m looking for.
I’m an explorer.

I’m a mover.
I move people’s hearts and minds.
I touch and inspire people a thousand miles away but
I can’t hug them, lie beside them, kiss them.
I’m a mover.

I’m a wanderer.
I wander in time and space and place.
I’m wandering in my father’s rooms in boots of Spanish leather and
Walk the path not taken in your company in my mind because
You are a wanderer too.

3.1bn euro in the bank. That is: 350 Irish people having hundreds of accounts in HSBC bank hiding billions of euro from the tax man in Switzerland. And: six police men arrest an elected member of the Irish parliament because he was involved in stopping the car of a minister during a protest against water charges.

One country where there ain’t enough money to open enough wards to cater for sick people. Another country where sick people are ‘traded’ between care providers and hospitals – especially those high dependency patients that need a lot of care over many hours and who bring in loads of cash. It like feeding on the misery and desperation of others.

At times, I am so furious, so mad, in such a state of awe at what is a world that does not make sense to me at all at all. What has happened to common sense, to justice, to humanity? Can we only find that with our family and friends?

When I think that we are almost expected to hand over Pádraig, our son, who is in the most vulnerable of vulnerable situations, to people who think “profit” first, that we are almost expected to do this because we are told that we need to continue with our own life too, because we need to look at our own physical and mental health – then, I feel shivers running down my spine.

Pádraig is getting better, he can understand us, he reacts, and – bit by bit – he is learning how to communicate. To interact with him, you need time, you need to be patient, and you need to be interested in Pádraig – and not so much in the money you can or could make or spend.

My guess is that this would be the case with almost all the other persons in his situation – but no-one, apart from their families and friends, is providing the support they need in the way they need it. Es ist zum Mäusemelken.

The Germans have a problem: Anlagennotstand.

If you think of what dominated some papers’ headlines recently, every country had their problem: there’re soup kitchens in Greece; huge unemployment especially amongst young people in Spain; a record number of trolleys in Irish hospitals; you name it…

German don’t have that problem. Theirs are different.

The last issue of Der Spiegel captured what moves the Germans on its title page, showing a worried-looking couple.

You almost felt like offering them help. Then, looking down the picture, you notice that they carry large stacks of cash.

So, what’s the problem, you begin to wonder? Are they bank robbers and had they just been caught? – So you read on…

Their problem, it turns out, is: “Wohin mit dem Geld?” Their “crisis”, their “Notstand” is: where to with the money? Wohin mit dem Geld? It’s farcical, comical, tragic, maybe even obscene? The world is on fire. And the most influential and serious German magazine cares about those who don’t know what to do with all that money in times of low interest rates.

Die Problem möcht’ ich auch mal haben.

Today was a brilliant day, blue skies, spring-like. The three of us brought Pádraig’s sister to the Tonndorf train station to say good-bye. It was really sad to see her leaving, but at the same time, it was Pádraig’s first time in a train station in a long time. We discovered that (once they fix the lift to the platform) Pádraig could travel with us into town in less than 10 minutes.

Some day soon!