“Life is like riding a bicycle. To keep your balance you must keep moving.” He wasn’t a super-cyclist and he certainly wasn’t a therapist. But he was Einstein.

Wednesday is Pádraig’s massage-day. Soothing music and a relaxing massage. What a start to the day! Later on, in the early evening, Pádraig went to what must have been one of the best choir-led carol service, or Christmas concerts, ever. St Patrick’s College in Drumcondra was the host making it obvious why their music programmes are so well-known and well-respected. Pádraig hugely enjoyed the evening, the music and the first minced pies of the season.

By contrast, I spent the evening attending a course in governance for charities, together with some distinguished board members of the An Saol Foundation. I won’t bore you with the details.

Earlier in the day, however, I got a sneak preview of what our architects have been planning for the FABrík, the living lab and day centre we’ll be opening next year. They will present their ideas to the An Saol Foundation Board next week. What they are proposing is mind-blowing. It really captures the Dreamboaters’ spirit realising the most exciting, brightest, and energising space for life and living, for holistic neurological rehabilitation. It’ll change the lives of those being, living and working there.

With all it’s highlights and lowlights, today was about living. About feeling, hearing, touching, smelling, tasting. About living and being alive. Keep moving, keep living.

Pádraig put one foot in front of the other, straightened his leg, stood up, moved forward and did the same with his other leg. Slowly but surely he moved himself, he walked from one side of the pool to the other. I was supporting his back and was holding his head and could not see what was going on. But I was feeling it and obviously noticed how Pádraig was moving forward, lifting himself out of the water. But the carer who accompanies us saw it all happening. None of us could believe it. It was truly extraordinary. “Christmas has come early, eh?” said the pool manager who had been watching Pádraig, when we were getting out of the water.

I struggle with the concept of ‘miracles’. But today, in my mind, Pádraig could have walked on water. It was that good.

Here is something you can do if you live in Ireland. Check out the website of the Neurological Alliance of Ireland and send a message to your TD to support a private members’ motion.

The Neurological Alliance of Ireland (NAI) today published details of a Private Members’ Motion to be raised in the Irish Parliament, the Dail, this coming Wednesday. They are asking people living in Ireland to contact their TDs, their members of parliament, to support this motion.

You can find the text of the motion here and you can send an automated message to your TD from here.

The motion addresses the incredible state of the services, or rather: the lack thereof, in neurological rehabilitation. Just some points:

— the National Policy and Strategy for Neurorehabilitation Services (neurorehabilitation strategy) was published by the Department of Health and the Health Service Executive (HSE) in 2011, with an implementation plan promised within six months but still unpublished six years later;

— the Minister for Health in February 2017, requested an implementation plan to be published by the end of June 2017, but a working group to develop the plan has not yet been put together and this is the second deadline announced and missed in 2017 as the HSE will not deliver the plan by December 2017;

— it is estimated that only one in six people who need specialist rehabilitation services in Ireland can access them;

— Ireland has less than half the number of specialist rehabilitation beds recommended for its population;

— Ireland has the lowest number of consultants in rehabilitation medicine in Europe;

… and they are not mentioning:

• the lack of social rehabilitation. The my mother in-law was in her late eighties, the was collected from her home to play Bingo twice a week, despite here repeated protests (“I haven’t played bingo in my life and I will not start playing it now”) because people need social interaction. – But guys in their 20s with an acquired brain injury don’t seem to have the same needs …?
• rehabilitation services are available in places like the Central Remedial Clinic (CRC), just a few kilometres away from where we live. But – our request to offer these services to our son was rejected because he was not born with a disability!?
• home care services, although sanctioned and budgeted for, are not delivered, two thirds of our son’s carers are allowed to take leave simultaneously, carers ring in sick – but there is no cover provided; all that when I am looking not just after Pádraig but after someone else in the house too!?
• the list goes on and on and on…

What is going to change? When is it going to change?

The answer is easy: when WE WILL MAKE THAT CHANGE. Nobody else will do it for us.

50 years after a famous book was published by (another:) famous German, here is a slightly modified quote: A spectre is haunting Ireland – the spectre of decency. Dreamboaters of Ireland. Unite!

The Adventsplätzchen I made yesterday are still around, we didn’t manage to eat them all. With them there is the smell and the taste from times past when things were easy. When nothing went wrong. When troubles were: not being able to watch “Flipper” on a Sunday afternoon and having instead having to go on this Sunday afternoon “Spaziergang” in a nearby park. When the highlight of the month was: being allowed to go to the special Sunday afternoon kids cinema show offering of Karl May’s Winnetou 1 (and the follow-ups). When adventures happened in my mind, when I was, under the table, covered by a long blanket and using a flashlight, reading about life on horse back, blood brothers, and men who kept their word.

Since then, and especially more recently, the sense of security has gone. Replaced by fear.

But tonight, and following a visit by one of Pádraig’s friends, things have changed a little. Just for tonight. For the time being. Calm is the dominating feeling. Don’t expect anything. Accept what is there.

Pádraig went to visit his grandaunt this afternoon. He had an easy day.

When I find myself in times of trouble, I sometimes think there is no answer. And when the broken hearted people in the world agree that the answer is: well, just let it be, I think: well, that’s what it is. Let it be.

There are times when I ask myself the most difficult questions. And there is no answer to them. So I’m better off to just give in and go with the flow. To let it be. In my hours of darkness, I’m listening to the words of wisdom telling me Let it be.

It’s Saturday night, I’m listening to the sirens in the distance off the open window. I’m wondering what it was that brought me to the place, to this life, to these incredibly complex circumstances. –

So, finally, here are the pictures from last night’s Winter Songs by Candlelight in Our Lady of Dolours, fundraising for Caring for Pádraig.

There are pictures of the legendary Sam Maguire Cup with Pádraig and his friends, a few pictures of Pádraig’s former child minder’s husband who managed to get hold of a Dublin jersey with 18 signatures of this year’s All Ireland winning Gaelic football team, of friends we hadn’t seen for some time.

It’s around the midnight hour and I’m just settling down after what has been an incredible evening with hundreds of people at the “Winter Songs by Candlelight”. In my life I haven’t seen anything like it. From the music, to the reflections, readings, poetry and an astonishingly decorated church to the new Parish centre, a huge raffle, the auction of a signed Dublin football jersey, and food and drink of all kind. The highlight for those taking pictures was, of course, the Sam Maguire Cup. And while there are many really good pictures from the night that I will upload tomorrow when I’ll have recovered from this extraordinary night, there is one picture I want to share tonight showing Pádraig and some of his really good friends – and Sam Maguire!
In my mind, this is what I’d call a classic!

Here is the bad news: whatever I do – my life will end. One day. In the meantime, the one thing I can do is to make the best out of it. Enjoy what life offers, spend time with the people I love, and be kind to others. Find my mission in life.

Easier said than done, says you.

As always, Leonard Cohen got it when he remarked, “The older I get, the surer I am that I’m not running the show.” But – I can pick the part. my role in that show. Will I be the sad guy, will I be the joker, will I be the reasonable, the angry, the happy, the lonely, the party-goer?

Bad things will happen in my life. (They have.) But even when that happens, I can run along the sea, watch the sun coming up over the horizon and the frozen ground. And feel blessed. I will come across horrible people. But when that happens, I can decide that they will not define me, that I will acknowledge them but not engage; instead, I can decide to spend time with people I love, with people who love me. I will come across people who need help, a kind word, a smile, a ‘how are you today?’ and I can decide to offer that to them; and discover that when I’m looking at their faces, I am looking in a mirror, I will see a kind, beautiful face with a lovely smile and a sparkle in the eyes.

Pádraig managed to control his face, his lips, his tongue today when his speech and language therapist today asked him to show her how to make a narrow “O” and a broad “I” with his mouth, to move his tongue as fast as he could from left to right, between his teeth and lips. He tapped his feet to the music during Music Therapy, and made a few loud, prolonged sounds. At the end of the day, he was proud of what he had achieved and he had every reason for it.

If you are free tomorrow evening, join us in Our Lady of Dolours, in Glasnevin, at 7pm, opposite the main entrance of the Botanic Gardens for a fabulous night of Winter Songs by Candlelight, followed by mulled wine, mince pies, hot chocolate, and marshmallows – and an incredible raffle. All proceeds will go to Caring for Pádraig, allowing us to provide Pádraig with the therapy he needs to continue to make progress. The first of Advent is around the corner, so is the promise of light, the star that will lead the way to new life.

Rumour have it that the Irish Minister of Finance (!) has made a donation. Another first! And very gratefully received!

Like all real heroes, Sam died of “a broken heart and penniless”, in 1927 aged 49. He was a successful Gaelic footballer and became Chairman of the London County Board, as well as a trustee of Croke Park. Apparently, he recruited Michael Collins to the Irish Republican Brotherhood in 1909 and for many years was one of Collins right hand men. Like many Irish heroes the legend started after his death. The Sam Maguire Cup, probably the most famous trophy in Irish sports, was designed and presented to the Gaelic Athletic Association in 1928 in his honour and after his death in 1927.

Why is this all important?

Because this coming Thursday, rumours have it, the world-famous Sam Maguire Cup will appear at “Winter Song by Candlelight” organised by the Parish of Our Lady of Dolours, Glasnevin, for “Caring for Pádraig”. – Another reason to join us at 7pm this coming Thursday! (AND: there will be a fabulous raffle with free mulled wine, marshmallows and all sorts of other seasonal goodies!)

Today I had a terrible encounter with the most incredible inconsiderate, heartless person, the kind of person I didn’t think even existed. I was shaking afterwards and it took me the best of half an hour to find my composure. It reminded me that there is only one strategy to deal with these kind of people: stay away from them, do not engage, at all at all, and stay calm, always calm. It was so bad that I almost feel a weird sense of gratitude to that person for helping me to learn this invaluable lesson.

Today, I also has the most delightful, fantastic, incredible half an hour with one of Pádraig’s carer and the man himself, walking on water – well: in water, though it felt, to me, he was right on top of it. He is struggling with his right leg, but he was moving his left leg forward, he stretched it, and he stood on it! On the side of the pool, he held on to the bar, with both hands, and he stood without any support whatsoever, except for me supporting his head a little with one hand, for at least a couple of minutes. It was another first, a new PB.

Worth the Sam Maguire!

 

“So kann das nicht weitergehen!” – I’m sure there is a translation for this, something like “It can’t continue like this”, but, as is the case with many translations, this one doesn’t quite hit the note. A bit like an Irish friend telling me that there ain’t a word in the Irish language that quite expresses the sense of urgency in the Spanish word “mañana” – the English translation of this German expression doesn’t quite capture the sense of determination to stop what is going on and to change course.

What am I referring to?

On my macro level, the lack of official interest, the lack of responsibility, accountability, transparency, and, above all, ambition, honesty and pride, in relation to the rehabilitation of survivors of a very severe brain injury – this lack has to be turned into overwhelming support. On my micro level, Pádraig needs to be participating in life outside the house. I find it difficult to spend so much time here, for Pádraig it must be so much worse. We have to do more immediate things like cinema, concerts, museums, walks in the city, and start planning mid- to long term action, trips, journeys, adventures. The way it is at the moment feels like being trapped in a space that produces claustrophobia, like a straight jacket.

Yes, Pádraig is making progress, slow and steady. But a life making slow and steady progress needs jumps down into the unknown, explosions of colour, leaps into the thin air, blind dates with adventure.

Pádraig got easily bored and always looked for exciting, interesting, new stuff.

I’m beginning to think that all the stuff we think is difficult to organise, his care, therapies, rehabilitation, is easy in comparison to avoiding boredom.

PS: Tonight, Pádraig had mashed potatoes, beans and sausage. Apart from the potatoes nothing was mashed. We’d never thought he could eat beans and sausages just like that. A complete underestimation of what he can do. I can only imagine, how much nicer it must be to taste and feel the texture of the food, instead of everything being mashed or pureed…