Pádraig put his hands upon the wheels today and it looked liked as he had decided to go down to the roadhouse to have a real good time… Let it roll baby roll…

It was completely unexpected. He was just tired to have his arms up on the table. So he moved them back and his hands came down beside him. We put he hands upon the wheel – and when he noticed he could move his wheelchair forward and backward – that is what he did. Sure, it was more a rocking motion than a moving or driving motion. But there was motion. And he had it under control!

The future is uncertain and the end is always near – in the meantime, we’ll keep moving and we’ll keep having a real good time, the best we can under the circumstances!

Thursday evening with Pádraig’s friends. Has been going on for months now. Brilliant idea. They set up a whatsup group and make sure that every Thursday evening one, two or three of them call in to Pádraig. They chat, have a bit of fun, they bring something to eat and to drink.

This is Pádraig’s table after they had left tonight. Some paella from Juan’s famous Spanish kitchen takeaway, vino, Coronas, minced pies – after all it’s still Christmas!

Pretty messy. Beautiful.

The last visitors are leaving. Carers and therapists are coming back. And I am confronting all the things I didn’t confront last year, those things I wanted to address during the quiet (!) Christmas period, but, of course, never did. No surprises here.

From tomorrow, we’ll have two days of (almost) normal routine again, before another weekend break to finish up the last Christmas sweets and to put away the Christmas decorations for another year.

I suspect Pádraig will need a few days to get back into the swing. It’ll be as difficult for him as it will be for us, at least physically, to start with the daily exercises and routines that were all thrown over-board for nearly two weeks by now.

It’s the every-day stuff, the things that you don’t see anymore, you don’t hear anymore, you don’t feel anymore, you don’t taste anymore, you don’t smell anymore because they are so familiar that they pass by unnoticed.

Like this message from an automatic ticket machine in Dublin Airport telling me that “Change is possible”. ” YSE, it is!” I thought.

I needed this re-affermation today because, to be honest, I feel absolutely exhausted and tired. Christmas was fabulous and being in the company of so many good friends and family members was exactly what I think Christmas is all about. But the last two weeks or so, without carers to help, was also very tiring. And as always, it’s when you stop, when it’s over, that you feel the exhaustion.

Pádraig went with us today to the airport again to say good-bye, this time to his uncle.  The amount of people leaving Ireland after the holidays was phenomenal. So were the queues. We spent almost two hours waiting for the check-in, getting a real feel of what it means for so many to leave family behind to go to very far away countries to make a living. For all of us, including Pádraig of course, it was much more, for the second time in just a few days, than just getting out of the house for a few hours. It was experiencing this deep, sad, hurting feeling of people leaving their loved ones. First hand.

Some things are beyond our control. We can’t influence or change them. But there are things we can. Change is possible. And we’ll demonstrate that to all who want to listen, to see, to taste, to smell. To all who want to discover the ordinary every-day stuff for those living extraordinary lives. With an emphasis on ‘living’.

There is this thing of being comfortable. When you live in a place with people under circumstances and in an environment that I’m familiar with that I feel comfortable in. Life kind of ‘plätschert so vor sich hin”, it moves along with few disturbances. I stay within my comfort zone, I’m in control of my life, do the stuff and am in the company of people I’m comfortable with.

And then: “bang”, it all goes up in smoke.

I’m learning fast and the hard way, that life can catapult me almost instantly way out of my comfort zone and that me controlling my life is nothing more than an illusion.

To be able to adapt to such situations, it’s good to practice, to see what it is like when I’m moving outside my comfort zone, when I need to push myself that little bit harder.

It seemed like a good idea when we planned this some weeks ago. To go swimming on New Year’s Day at the 40 Foot out in the sea in Dun Laoghaire. Last night, I had secretly hoped for storm, wind and rain, so bad that we might have to cancel our plans. While it was very windy, there was no rain but a blue sky with just a few clouds. Bitterly cold – but no reason to cancel our outing.

Getting into the water was the hardest part. When we got  out, I really felt fabulous. It was unbelievably good.

So here is the plan for 2018.

Get out of my comfort zone. Do things I haven’t done before. Experience the thrill, the rush, the excitement. And feel comfortable doing uncomfortable and, at times, very upsetting things.

…Year. 2018. Coming back to the hospital was an out-of-this-world experience four years ago. Tonight we’re all at home. Awake even! Just about. What a difference.

2017 wasn’t an easy year. It was terribly sad, frightening, depressing, sickening, exhausting. It also was exciting, uplifting, funky, adventurous, energising and full of hope and promise.

I get the feeling 2018 will be pretty similar.

But it’s good to start all over. New. Tomorrow morning. With a swim in the Irish Sea at the 40 foot!

Happy New Year 2018!

Everybody feels different about Christmas, from it marking the birth of Jesus Christ to presenting an opportunity for taking time off to reflect, to chill out. I don’t know how many people who wished me a Happy Christmas this year added: I hope you’ll find some time to just sit back and relax.

It has been anything but. I don’t remember a time when we ever had so many people in the house so many times within just a week or two. It was incredible. From Pádraig’s Christmas Party to our Irish and German families meeting up for the first time in many many years.

Pádraig was in the middle of all this beautiful mayhem. He ate and drank what we ate and drunk. There was absolutely no routine. There was not a sign of organised therapy.

Yet, I think that this was not only the very best Christmas he ever had, but the very best few weeks, with so many friends and family, spending time with him and us and with each other.

Tonight was family night. Cousins, aunts and uncles, brothers and sisters, nephews and nieces, from all over the world got together in our house for a few hours to catch up on each others’ lives. Some had not met for years. And I have this feeling that we all won’t ever meet each other again.

Someone gave a speech remembering each of the many family members who had died in recent years. It was hard to take, although there was also hope, with some family members, who had been told they’d die, surviving and with new family members being born. (I’ve been trying to find a similar story in The Dead by Joyce tonight, but it’s just too late to do this now.)

Pádraig had a great time meeting his cousins, aunts and uncles. He had a bit of the party food and a bit of a bottle of Coronas, while he was listening to and watching around the buzz of this latest big family meeting in our house!

I have a plan for New Year’s Eve. I will sit outside, with a glass of brandy and a cuban cigar. I will blow rings of smoke into the air and watch them disappear. From time to time, I will take a bit of the brandy and feel it going down into my stomach creating this burning, warm feeling.

On the first day of the year, I will get up, have a cup of coffee and drive down to the 40 foot. I will meet a few friends and together we will go for a swim.

Leaving the old behind and greeting the new will both be pretty intense. I want to mark that changeover to the new year, because it will mark change in my life.

Some of my German family is over for a visit. Just a few days. We watched old photographs together on a big TV screen. I took a copy of the USB stick the photographs came on. A lot of work had been put in to their preparation. I will keep that copy, but I don’t think I will watch the pictures again. Looking back is hurtful.

Today being Thursday, Pádraig had his friends over for visit. At lunch time, one of his best friends stopped by on the way to the airport, a one way ticket to Nepal in his pocket. Later in the afternoon, another two friends stopped by sharing stories about their lives and adventures.

I’m thinking. What will be our next adventure?

I was going to write something about onions, comfort zones and the illusion of control (my favourite topic:), stuff that has been on my mind for some time now. Alas, it’ll require some quiet time to do that. And quiet time is in short supply at the moment. And when it’s available, it’s too late in the day and I can’t get my thoughts together.

So instead, here is a piece about the miracle of Christmas or rather: a Christmas miracle. Whether you believe in them or not, this one really happened. And it wouldn’t have happened without some divine intervention.

After months, if not years, of waiting, of first appointments and follow-up, it took just a day or so for a specialist in the Dublin CRC Assistive Technology Department to build a new table for Pádraig that has a build-in sunk-in button that is connected to a bleeper giving him (and us) auditory feedback when he uses it.

Pádraig has been using a button giving this auditory feedback for some time now, but mostly with his left food – which made the whole exercise logistically a bit complex. In addition, this new button can also be connected to the Tobii Dynavox or any other electronic device and, we hope, with the help of a splitter (which I will be looking for) to the bleeper and the Tobii at the same time.

So, here we are, practicing with the new, invisible, always available, button. One bleep for ‘yes’, two for ‘no’, three for ‘I don’t know’, a bleep to make a selection, a number of bleeps to solve simple maths problems. And then we thought to introduce an ’emergency bleep’, the ‘SOS’ bleep, the ‘Mayday Mayday Mayday’ bleep. In other words: loads of bleeps until someone reacts and comes to the rescue.

It’s absolutely fantastic. And great fun. (In order to keep the video short, this is just an extract of the session we had – and Pádraig stopped the ’emergency bleeps’ by himself when I asked him to do so. These bleeps are totally controlled by him.) You could see how Pádraig is enjoying the access to a device that is there when he needs it. That he can control. One for which he doesn’t need anybody to offer it to him to answer a question. I think he was quietly over the moon. And he couldn’t stop himself having me on with his provocative ‘bleeps’ answering (consistently) the opposite to what I would have expected. Great fun.

But also quite frightening. Because: seeing the difference that this is making to him, knowing that there are people around the corner from where we live, them knowing how dependent Pádraig’s well-being is on such a device, well knowing all this and more – how could it take so long to make it available to him. What a difference it would have made to him, his life and his health, if someone had followed through on this two years ago.

They had some ‘experts’ on in the morning giving advice on how to deal with difficult situations in your life: break the problem down into manageable chunks, sleep well, eat well, exercise.

There was only one way to deal with this – and that had nothing got to do with any of the advice given this morning by the experts on the radio.