Saturday is sitting-beside-the-fire day, chatting and listening to the Saturday newspaper. Pádraig really enjoys that. The company. The news. The comments. One day, he’ll be able to tell us what he thinks about what’s going on in the world.

Today is also Nollaig na mBan, ‘little Christmas’, the day that women relax after the busy Christmas period and men take over the housework. In my mind, even the concept is strange. But – as over the Christmas period:) – I cooked a nice meal for the women in our family and joined in, together with Pádraig who ate and drank exactly the same food and drink we had. Mightn’t sound like much but it still feels like a small miracle each time he does it. Which now is every day.

Three years ago, this night, we couldn’t sleep. Pádraig was in the Schön-Klinik. We were in Forbacher Straße. The next day, we were going to bring Pádraig, in an ambulance, to the University Hospital, the UKE, to see whether his tracheostomy could be removed – against the expressed, repeated, and long standing advice of his doctors. He was about to be discharged from the hospital and his doctors had decided that prior to his discharge he needed an operation to make his tracheostomy ‘safe’, i.e. permanent. We didn’t agree and had asked, for the umpteens time for a second opinion – and a removal.

My nose is running, my head feels a bit dull, and I’m sneezing like a level one hurricane. And I’ve been listening to several radio shows about how people will change their lives in the coming year. At the moment, I don’t really feel like doing anything drastic any time soon. But, of course, doing nothing ain’t an option. So I’ll turn Pádraig, go to bed, pull up the blanket, and think of something nice that happened today.

Like having a really nice dinner with the family and Pádraig beside the Christmas tree.

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?