Extravaganza

I can’t hear what I’m writing. And I’m blaming Pádraig.

We’d never have gone to the Button Factory tonight – but he managed to get us invited to one of the best nights of the year: the KILA Christmas extravaganza! It was fabulous. We were right in front of the stage – and right beside the gigantic speakers.

It was the first time that a song was dedicated to us, the three of us. The best Christmas present. For us to be there. Together. It was a waltz.

Pádraig used to tell us that when he went to concerts and turned around to look back, there was never anyone in his ‘shadow’, he was just too tall. Tonight it was almost the opposite: nobody standing in front of him. But we were not sad. He, and us, had an absolutely fantastic night. It was magic and he had a great time. Thanks to KILA (and family:)! It was the perfect Christmas party!

Before we went out to the Button Factory, loads of his friends arrived at the house, many of them not knowing they were going to meet so many of their old friends they hadn’t seen before, in some cases, for months.

How different this all is from how things were a year ago. How grateful we are that all of these things are happening. Hey, life is worth living! And Pádraig is showing us how much!

Roof

Last week a friend of Pádraig’s came to visit and we went for a walk along the Royal Canal, the one of the ‘screws’ and the ‘auld triangle‘ that went ‘dingle dangle’.

We went the ‘wrong way’, East to West, uphill – though you wouldn’t think that ‘uphill’ and ‘canal’ are concepts that could co-exist, there is a distinct difference when you push a wheelchair. But Pádraig was enjoying the change in direction, so to speak, and the friend was doing extremely well, given the, at times, pretty steep inclines. So I could do what I usually can’t which is looking around.

And there was this roof, in the middle of all the other roofs: covered by seagulls.

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I have no idea what attracted all these seagulls. There must have been some invisible factor that made them feel so comfortable on this roof that they all assembled there.

It made me thinks of walks down a street full of restaurants, some overcrowded, others completely empty, for no apparent reason.

Could be that seagulls, as people, just feel more comfortable in the company of others. Honestly, you wouldn’t want to be that seagull sitting by itself on a deserted roof, while or your friends had assembled ‘next door’, nor that lone person sitting on a window seat in an otherwise empty restaurant?

On the other hand, it takes courage to step ‘out of line’ and explore new roofs or new restaurants. It might not be as re-assuring to go out on your own, it might feel slightly uncomfortable to push your boundaries and start exploring.

Yet, this is exactly what dreamers and dreamboaters do. And guess what, it’s fun!

Tomorrow, Pádraig will go out to the Button Factory for KILA’s Christmas Extravaganza. And I feel so lucky and privileged that I will be able to go too. Imagine that, 30 years in Dublin and never been in the Button Factory!

Chagall

There are a few films that are like a boomerang. They come back. Once a year, mostly around Christmas. One of these is Nottinghill from 1999. Julia Roberts’ character Anna Scott sees La Mariée by Chagall in the home of Hugh Grant’s character, William Thacker. Anna later gives William the original as a present. The screenwriter, a fan of Chagall, chose La Mariée because it “depicts a yearning for something that’s lost” – which is what romance is all about.

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They showed this film tonight and I watched it, I think, for the 20th time.

It finished far too late, but watching it made me feel for a couple of hours as if this Christmas was one like those of the past, one that I was yearning for.

The reality is: it’s not. The love this Christmas is stronger. Much stronger. Than ever before.

Mary

We’re hearing quite a lot about Mary these days, how the Angel came to visit her, how she responded to the ‘good news’, and what Joseph’s first reaction was when he heard about his fiancé’s pregnancy. Mary and Joseph and the little Jesus also appear on many pictures showing different scenes of the nativity. All pretty traditional.

But.

A good friend of Pádraig’s and us brought back an incredibly unusual Christmas Card from the Fitzwilliam Museum in Cambridge (UK), from the 15th Century French Book of Hours.

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What is very striking almost immediately is that it is Joseph who is holding the baby Jesus while Mary… what is she doing? Yes… she is reading a book!!! It’s not quite clear, though it looks as if the book is printed – the first Gutenberg Bible had just been printed in 1455.  Whether it’s printed or not… showing dad holding the baby while mam is reading a book must have caused some eyebrow-raising in the 15th century! And even more so because it’s a scene from (then) 1400+ years ago! A book! And a woman reading it! At a time when women were not educated and did not have access to the kind of money needed to buy a book! What was this painter on about?

Looking at the picture a bit longer and in more detail brings up other unusual aspects: why the big read blanket in the middle? Why dress Joseph in the blue, very expensive paint and not Mary as it was custom? Why is baby Jesus not in the centre of the picture but pushed down to a corner at the button?

It’s so refreshing and exciting to see familiar scenes from a completely different perspective! Isn’t it?

Pictures like these, when we not just see them in passing but allow their significance to challenge long established widely accepted perceptions, are so powerful!

We need more of these pictures!

Of persons who were never supposed to have fun ever again, having fun. Persons who were not supposed to eat or drink ever again doing exactly that. Persons who were supposed to spend the rest of their young lives in bed, going out enjoying walks in the park, joining friends at concerts, participating in all kinds of projects. Boarding the Dreamboat!

Ahoi!

Tree

We’re ready. This year, we’ve one christmas tree in the living room, we have lights on a really skinny birch tree in the front garden, and we have another christmas tree right out in front of Pádraig’s window in the back garden. It’s not huge, but it’s respectable enough.

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Let’s hope Santa won’t get mixed up or confused about where to leave the presents… And if he does… that won’t be the end of the world either. I’m not saying that I’d be getting like my mother who, when we asked her what she wanted for Christmas, always said ‘I want you to be good’. I like surprises and I like presents. But, I must say that I am happy already. I feel like as if I had got my christmas present already.

This year, it feels for the first time in many years that we are home, all together, the whole family in one place, as happy as we can be.

It feels like the Christmas we’ll be looking back to saying ‘how nice was that year when we were all together back in the house’!

Oh Tannenbaum!

“Country of origin: Germany. Not suitable for human consumption.” (Herkunftsland: Deutschland. Nicht zum Verzehr geeignet.”) What is your first thought when you read this? Whatever you’re sinking, my first thought was that this is a pretty biased label. And I’m not making it up!

But the real strange thing about the label was that I found it when we were buying Christmas trees!

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I mean: even if you were really enthusiastic about stuff originating in Germany (many people are:), would you need a word of caution telling you not to take out a bite off that Christmas tree? Come on! – This is like the allergy warning required by the EU that salmon might contain fish!

Life would be much less fun without this stuff. But it does seem to be a bit of waste. Especially as the label was in German, and it was fixed on tree for sale in Dublin! It’s irony is lost on most buyers! And if it was meant in earnest – what about those poor buyers not speaking German? Buyers who just might chew off a nice juicy branch?!

Back to normality.

img_6380This afternoon we went to a farewell party. A good friend and supporter will be heading back to Germany later next week. Her friends, most of them from Drogheda, gathered to bid her fare thee well! Although it was a long auld drive up North, Pádraig really enjoyed the trip and the party. It was sad to see our friend getting ready to go back to the ‘Heimat’, but good to be with here today to wish her all the best! She has already planned her next visit to Ireland so in reality it won’t be very long until we’ll see her again!

Bananas

Look at this: can you believe it?

I find it hard to believe – although this is now part of Pádraig’s daily exercise routine. A year ago we were concerned that he might not be able to leave the NRH for Christmas. How things have changed!

But it doesn’t stop there.

Today we went into the mountains. That part of Wicklow where neighbours complained during Ireland’s boom time about the constant noise of private helicopters flying their celebrity owners in and out of their luxury mansions. For us, today was a little bit like that, only several ‘numbers’ smaller. Instead of a helicopter, we had a drone; and instead of a mansion we met in a beautiful wooden house the owner had christened ‘the shed’.

We met a group of the most interesting, smart, and entrepreneurial scientists and business people, all interested in developing the use of drones for people with disabilities – in the first instance for Frank and Pádraig.

The meeting was the kickoff for a formal project to develop ideas into prototypes and then into, hopefully, life-changing apps for wheelchair users. The two generic ideas we were discussing and (literally) playing with were (1) personalised real-time maps for wheelchair users assisting them to find the most wheelchair-friendly way to reach their destination and (2) enabling disabled persons to take part in extreme sports such as rock-climbing or para-gliding using live virtual reality technology.

It was an absolutely fantastic day – probably the longest day Pádraig had spent in his wheelchair in a long time, but really enjoyable for him. There was even a really nice birthday party for the leading scientist thrown in!

This was “an saol”, the dreamboaters going bananas in the mountains. Pure magic.

Remarkable

Friends gave us a voucher to go out together, all of us. So tonight, Pat and I went out to check the place out. To have an evening (well: an hour:) out together and to see whether there’d be enough space for all of us.

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It’s a really nice place. Maybe 10, 15 minutes walk from the house.

So, one evening next week, that will be our evening out. Can’t wait.

A remarkable thing happened today. Two people, far away from each other, not knowing of each other, never mind knowing each other, said, independently, that they are 100% convinced that Pádraig will be able to walk. That he had that stamina and determination to get back up on his feet and walk. They weren’t trying to be nice, they were not prompted and they had no reason to say so.

I’m telling you: nothing, nothing is impossible. There are no boundaries. Limits imposed by laws of physics don’t exist. If you want something and you try really hard, you will get there. The hurt, the occasional disappointed, the despair, even the tears you’ll encounter on the way are just part of the journey. They come and go. All the time you’ll know that in the end the Dreamboat will float and you’ll be on it steering it towards the sea. Standing behind the wheel.

Keep going. Keep moving. Leave all these obstacles by the wayside. You’ll be getting there. Nothing and nobody will stop you.

Change

When Pádraig had his accident, we desperately tried to get our hands on any information and help we could get for him. We came across a quote by Dr Aine Carrroll which really shocked us – she was talking about rehabilitation services available for persons with severe brain injuries:

“It is very labour intensive because we have such a shortage of beds. We can’t justify anymore beds because you can make the argument that it is a much better investment of resources to invest that time and effort into individuals who are going to increase their functionality, reduce care costs, hopefully get them home, get them back to work. These are individuals who will never get to that point, so we have to limit the number of beds for that service to three.”

(http://www.medicalindependent.ie/5062/fulfilling_a_duty_of_rehabilitative_care) (underlining is mine)

This morning, the HSE published their 2017 Service Plan. On page 32, it commits the HSE to:

…establish an innovative pilot day service aimed at supporting people with severe acquired brain injuries.

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So tonight, we are celebrating that we have managed to change the hearts and minds of people who now realise that the most vulnerable amongst us have a right to live their life with dignity and respect.

Pádraig with his perseverance and determination, never taking a ‘no’ for an answer, has done what a year ago seemed to be the impossible.

Dreamboaters, ahoy! Change is coming!

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Absolutely exhausted. Can’t believe what 45 minutes in a pool can take out of you! Pádraig is getting so much better, kicking his legs (well, moving them up and down), stretching his arms, keeping his head above the water line.

It was a day when Pádraig got use of the Wonder Drug – not by prescription but because of the help of his friends.