Doblò

IMG_0770Almost a month after my mother, another mother passed away. She knew Pádraig. Her family agreed that she would have wanted that her car, a wheelchair adapted Fiat Doblò, would have been given to Pádraig. This is an incredible manifestation of generosity. – But it doesn’t end here.

In the meantime, I spent the day getting the car on the road for Pádraig. It all took a bit longer than planned, with lots of waiting and hanging around, but now it’s ready to be driven to Hamburg. There were newspapers in most places where I had to wait.

Pádraig was doing well today. His doctor came in for a check-up, the physio did his work with him, only the speech therapist didn’t make it.

Here are two of the headlines and articles that caught my attention.

The first is quoting the incredible waiting figures in the Irish health system. The other confirms that the countries offering free or heavily subsidised sports activities to kids are on the right way. The two examples are key areas where the Irish government need to make changes, investments – rather than talking about lowering taxes or handing out the money.

As I mentioned, there is more going on:

FullSizeRender

Keep the date!

 

 

Picanto

UnknownThere were some emotions when I drove back to the village where my mother lived for the past few years to return the Picanto to my sister and brother-in-law who had made the car available to us when we arrived in Germany. For the last time in the Ferrari-red Korean racer down the autobahn at the dawn of the day. Thinking all the time that I was going to visit my mother.

Instead, we went to a cemetery to visit and clean up my grandparents’ grave, and then on to my parent’s and my sister’s graves on a different cemetery.

I know people who make a point in visiting cemeteries in the countries they visit because, they say, that’s the best place to go to if you want to find out about the culture of a country.

German cemeteries are showcases of straight lines, immaculate flower arrangements, uniform styles of gravestones, kept really well to show everybody how much you care. When I didn’t pick up the smallest leaf, tear out the tiniest speck of grass from my father’s grave, my mother often told me of her horror when imagining what the grave would look like after her death. Today, I tried my best but am sure that in my mother’s eyes, if she was looking, it was a job very badly done measured against her standards.

Pádraig today managed to pull his leg back into bed when it had slipped out. He also managed to eat well with one of his carers – which is not always a given. The morning was a bit hectic, Wednesday is the day the speech therapist arrives just when the physio is leaving. But it’s a good kind of busi-ness.

German train drivers are on strike today and the rest of the week so I was lucky that I made it to Cologne airport by train and back home just before midnight. I’ll collect Pádraig’s car tomorrow morning. Can’t wait to get it to Hamburg to go on a spin with him.

 

Iscream

Pádraig is learning to make himself heard again. During the night when he is uncomfortable. In the morning when we ‘sing’ along to ‘Colours’, the version recorded in Whelan’s backyard by Maitiú and Friends. When he finds it difficult to be lifted into and out of his wheelchair. There is more to come, without a doubt.

He is making progress. All the time. We all believe that he has this magic that keeps him going and us doing things we never believed in our wildest dreams we would ever attempt. He is the reason for people doing the the craziest things, for people opening their hearts, for people joining across the world in love. (Autsch, I hear you say: world peace?)

images1A year ago, a logo therapist tried to persuade Pádraig to have a tiny little bit of ice-cream. In his cell we could only enter with the permission of the nurses, dressed up in protective gowns and our faces covered with big masks. – Today, Pat went out for a walk with Pádraig in the sun into the park beside the stream passing by an ice-cream parlour where she bought an xxl “Kugel” for him with a wafer all of which Pádraig finished with ‘gusto’.

I’ll be off tomorrow for a few days. First visiting my sister and family, returning the Ferrari-red Korean Picanto full of memories and abandoned hope and plans. Getting a late night plane back to Dublin, getting the new full-blooded Italian Doblò. Emptying sheds and kitchen for the building work soon to be started. Driving back via England across the seas and through tunnels under the sea. The best part of 20 hours. Loads of time to think…

 

Food

I don’t know how many people I’ve asked whether there is a cook book for persons like Pádraig. They looked at me as if I was from Mars. Even the dieticians. Their answer was: just go into a supermarket and have look at the dairy section. All the soft stuff.

Nice one, but it ain’t as easy as this. There is stuff that ‘bonds’ badly with the chemistry inside a mouth that isn’t used to food anymore, an environment that produces phlegm, stuff that is difficult to swallow. Milk products are part of this range. On the other side, there is other stuff like ‘Apfelmus’ (stewed apple) or mashed carrots or broccoli that is easy to process and easy to eat. This stuff, in a way, by-passes the bad chemistry or, maybe, neutralises the phlegm (or mucus). – So, why isn’t there a guide, a cook book, pointing all of this out, telling those of us who need to know, what we should be cooking?

There is another issue I’ve been thinking about. Where there are limited resources, people tend to do whatever they can to get access to those resources. Once they’ve managed, they’re happy. Bu if they shared their knowledge and thus facilitated other people to get access to the same resources, they would even be happier.

The new, foldable Vojta-table

The new, foldable Vojta-table

Today, a new miracle arrived: a full-blown brand new Vojta-Table. A therapy table, so big, it just about fitted into Pádraig’s room, and only because we deduced that his wheelchair could be parked in the hallway.

Food, and food for thought.

Doblò

It depends.

Following the Charlie Hebdo killings in Paris, hundreds of thousands went onto the streets to protest, including many heads of state. They declared their solidarity with the victims.

In April, the New York Times reported that, so far in 2015, more than 1,500 people drowned in the Mediterranean trying to reach Europe. Heads of State of the European Union observed one minute silence.

It depends.

Not the exact model, but the type of car friends are giving to Pádraig.

Not the exact model, but the type of car friends are giving to Pádraig.

Last week, the mother of an old friend died. She owned a wheelchair enabled car, a Doblo. And guess what – well, I know you’ll never guess. The family decided that it would have been her wish for Pádraig to get her car. This coming week, if all goes according to plan, I’ll be driving the car to Hamburg.

Is this not absolutely and completely amazing? I cannot believe this incredible generosity. Just can’t.

Good

imagesPádraig had a good day today, I’d say. Easy going morning and a long walk along a stream in the afternoon,  a small meal and into bed for the night. That’s how it was.

My mind is full of pictures, memories, plans, expectations, hurt, all mixed up, disoriented, out of sync, a bad headache and turned stomach. That’s how it feels.

I had always thought that a life has a beginning and an end. I am beginning to think that what’s happening here is that there are several lives all in one lifetime. I know my life is not my life anymore. Pádraig’s life definitely is not his life anymore. Yet, the world seems to be the same, we’re here, in the same world where we left our previous lives.

Pero yo ya no soy yo,
ni mi casa es ya mi casa.

We got a few of phone calls today: one from the team leader of the Lourdes train checking out a few details for the trip in just over three weeks time. Another from an Irish person in Hamburg who’ll be visiting us tomorrow. And a third one from someone we got to know in a hospital who’ll visit Pádraig and us as well. Busy times.

Busy times and a good day. In a different life.

Beo@3

Mayday. May Day. Workers are on strike. What an inconvenience. Anyway.

Two dreams.

One. I had. So had his carer. Pádraig talking. We both heard his voice in our dreams.

Two. The scene is our home in Dublin. Our apartment in Hamburg. Both with mountains of stuff. Useless stuff. Use less stuff. Stuff that reaches up to my throat like a rising tide. Things I don’t use and less need. The need to strip everything down to the core. To what counts. The essential. Not the noise, the fog, the stuff that covers up and distracts the heart.

Getting back to Pádraig today was good, right.

Only today did I get a chance to listen to the great programme Rónán Beo@3 on RTÉ Raidió na Gaeltachta of last Wednesday, 29 April 2015, when Rónán played a new song by Marcus Mac Conghail, a new song for Pádraig. – Even if you don’t have Irish, listen out for the ‘marathon line’

Ritheadh gach céim den mharatón
and every step was a step that was bringing you closer to home.

The song starts at around 2″20′ if you want to skip the introductions…

Screen Shot 2015-05-01 at 21.46.33And every step is a step that is bringing you closer to home. Pádraig. Dreamboater.

Sisters

It’s too late again to be writing. At least anything that would make sense. Work meetings most of the day, a long drive to Limerick and back, planning for the coming months. Or is it: for the months to come…

I’ll be getting a lift to the airport (busses will be on strike tomorrow) very early and be back in Hamburg for a second breakfast. It’ll be a bank holiday tomorrow in Germany. 1st of May is a day for demonstrations and speeches by workers’ union leaders.

It was really good to spend time with Pádraig’s sisters. We see each other far to little. All that will change later in the year.

Pádraig had a good an active day today, I heard. MOTOMed, Stehbett, physio- and stehbett. Tomorrow will be very quiet again with just one of the carers coming in the morning.

i’ll better go. It’ll be a short night.

Lifting

You can lift a weight. Something can be up-lifting.

Today, Pádraig decided to do a bit of lifting himself: he first lifted one arm, then the other. He’s getting really good at it.

And in a strange way, I believe the ‘lifting’ has got to do with the ‘standing’. Standing up in his magic bed brings back sensations he probably had almost forgotten about. Sensations that lead to movements. To alertness.

After many months, tonight I’m back in Dublin, having travelled half a day, having been at half a dozen of meetings, getting up tomorrow morning before the crack of yawn, traveling to the west. Days are always flying here. And on the next day it’ll be back on the red eye to Hamburg.

Whatever it is, this here is home. And it’s lifting me. Up.

Borsigplatz

UnknownThe plan today of calling it early is not working out. Borussia are still playing. Never would I have been able to imagine to sit on top of a house in Hamburg, Pádraig sleeping next door, Borussia Dortmund struggling to beat Bayern München to get into the German Cup Final.

Not sure what is more surprising: München not having beaten Dortmund (yet)? Me sitting in an apartment in Hamburg? Pádraig being asleep in the next room?

Just got an email to say that the incredible Marcus Mac Conghail will be on Rónán@3 on RTÉ Raidió na Gaeltachta national radio with a new song for Pádraig.

Pádraig is back eating much better, almost as good as before the operation. He is ‘standing’ in his standing bed every day. I transfer him, with his help (and another helper), between bed and wheelchair. His helper today said: “He really is a fighter!” – Tell us about it, I thought!

Screen Shot 2014-11-05 at 00.30.27By the time I finished writing tonight, Borussia Dortmund did the nearly impossible and beat Bayern Munich at home not in full time, not in extra time, but in a penalty shoot out! One more match and they’ll be celebrating on Dortmund’s Borsigplatz, painting the town black and yellow.

Nothing is impossible. When you are a fighter. And a Dreamboater.

=> Don’t forget to tune into Rónán tomorrow at 3 o’clock. <=