A TV ad shows a baby’s stomach retracting during the night and how this particular nappy they want us to buy adjusts. Each time I watch the ad I am getting so jealous of that baby. I wish my stomach retracted. Instead, it’s expanding. Despite my very best efforts.

Ireland has been very successful in flattening the curve. I, unfortunately, have lost that battle.

It’s not for lack of trying. And there is always hope combined with determination and perseverance.

One of the mornings this week when I got up early for my regular ‘run’ (you know what I mean), I heard  this loud shout coming from the direction of Pádraig’s room. I thought I was hearing things because that was not the voice of Pádraig’s carer and it could hardly have been Pádraig himself, it was so loud.

When I returned from my run and talked to the carer, they told me that Pádraig had used his voice during that whole night and gave a big shout early in the morning. It was that shout I had heard.

Pádraig has been using his voice over the past months, but he usually needs something to initiate sounds. Like when he drinks, or just before or after a cough. He then manages to clearly pronounce vowels, such as “a”, “e”, “o”, “u”. That night, he didn’t need any ‘initiator’. A brilliant first and, hopefully, a sign of more good things to come.

I came across a blog last week, called Transitioning Angels, written by Tracy, a lone parent to two sons, aged 12 and 8. Brendan Bjorn (12) is severely disabled, medically fragile, and has very high palliative care requirements. Her latest blog was on “The Disabled, their Family Carers, and COVID-19 in Ireland“. As she is mowing the grass in her garden and recalls how her father explained to her the difference between weeds and flowers, she wonders:

Would my own dad consider this grandson, whom he never got to meet, as a weed to be discarded as other family members have suggested, or would he see him as I do, as a happy blossom of love and light?

That sentence staid with me. It is almost beyond my comprehension.

Good Things Come To Those Who Wait is a wise saying – and a Guinness advert from 1995. I still like it. The saying, the ad, and the Guinness. And I really look forward to the day I can have that pint in good company and a nice public space.

Although I tried, I couldn’t find the Pampers advert with the baby’s stomach shrinking. No problem to find the Guinness ad. Enjoy!

There was a follow up ad a few years later, Horses and Surfers – for those who can wait.

And the music? – Almost as good as the magic Italian original from 1958 by Gloria Christian.

This is Easter and what better time for a new beginning and hope for the future.

There really isn’t a more powerful story I know than that of Jesus going through the most difficult time imaginable and coming out at the other end, giving others hope and strength and a ‘mission’ in life to help others.

Sometimes, I think my life gets lost in details and the big picture gets too little attention. The big picture being, more or less, what my New Year’s resolutions are all about: spending more time with friends and family, healthier lifestyle, being kinder to others. (These resolutions are so good, I never change them.)

I get upset about my life not being organised enough, about things not happening as I think they should, other people (oh, other people!) just not getting it.

And then I have (rare:) moments of clarity. When I think that the world and the people living in it will never be the way they ‘should be’. And that this is a good thing. That the only thing I can do is my best. Not more. But also not less – and that includes being ‘cool’ with whatever is on today. Not getting upset or irritated, not becoming hopeless, not to despair. Recognise and acknowledge reality with all its challenges (had considered to use another word here:) and move on to the Big Picture.

In the time before his accident, Pádraig’s, let’s call it ‘disposition’, had moved on from that of a typical teenager (and many adults) with a pretty low level of tolerance to that of the coolest person I’ve come across in my life. Someone very close to him explained that change to me: It happened because he was happy.

Now, there aren’t many people I know with a more challenging life than his – and there isn’t any other person I know who is ‘cooler’ about his life than he is. Happy, even when life gets tougher than it should. I guess, Pádraig is my Easter, full of hope, generosity and love.

Literally, the Big Picture.

Last night, people lit up lights all around the country and Sinead O’Connor sang a beautiful version of ‘Run’ from Snow Patrol. Light up, light up. As if you have a choice.

PS: Next on Youtube was Sinead’s version of Nothing Compares to You. Couldn’t get much better…Light up. Because you have a choice:)

“The goal falls short of the reach” – Do we achieve more than what we aimed for?

It’s Palm Sunday today but also, as a friend reminded me, Passover, the Jewish Thanksgiving, when God told the Jews to stay in their homes while he sent a plague to wipe out the Egyptians

We have been staying at home. Kind of a prolonged Passover, hoping the plague will disappear eventually.

I think Pádraig is a bit bored. Nothing new you might say, if you’ve known him for some time. He had got used to a busy day, An Saol in the morning, Hyperbaric in the afternoon, visitors and visits.

We are still around and we hear and see a bit of neighbours and family, even from a distance. I suppose it could be worse. It can always be, as we have learned.

He is doing a new-ish exercise on the ground, pushing his right leg, the one he has the problem with, up and down an incline.

The idea is to push his right leg a bit out to the right so that his femur stays in the hip while he is exercising his muscles which will, once they get strong enough again, hold his leg in his hip. Great idea by the physio who has been working with him for years.

Since Pádraig started to have his hip problem, it became harder for him to cycle his MotoMed. He then got a new manual wheelchair which positions him just a bit differently in front of the MotoMed. And that small change made it even more difficult for him to cycle. But check out what he did during the week:

More balance of power between his two legs, more speed and more power than ever before. It’s moments like this that make me really happy. And him even more.

What does it make me feel like? –

Being endlessly bombarded with the number of deaths, the number of infected, the number of coffins, the number of stranded travellers, the number of harbourless cruise liners, the number of…

With nonstop warnings that I am not allowed to –

exercise outside for too long, be too close to others, visit others, get away from home for more than 2km, attend the dying, or their funerals….

That I should

wear gloves and a face masks, take every person as an infected threat to my health…

Leonard Cohen – The Goal

Some of what I found in the news…

02 April 2020
BREAKING: COVID-19 death toll in Ireland rises to 98
Of the 13 that have died today, 9 are male while 4 are female, with a median age of 91.

Central Statistics Office (accessed 04 April 2020)
In the period 2010-2012, life expectancy at birth was 78.4 years for males and 82.8 years for females.

Journalists are helping to create a dangerous consensus
(Declan Lawn, Irish Times, 16.11.16)
We are getting ever worse at going against the dominant consensus. Fewer and fewer of us are anti-authoritarian enough and difficult enough to go with our gut and challenge the narrative. These days journalists are not rewarded for being difficult. A culture does not exist in which a journalist can render an alternative narrative without being dismissed as a loonie leftie or alt-right conspiracy theorist.

I was wrong last week. ‘Social distancing’ is not going to be the 2020 word of the year. It’s going to be ‘cocooning’. I had to look it up and learned that it was first used in 1981 by no other than Faith Popcorn. (I mean, if your surname is ‘popcorn’ which responsible parent would call you ‘faith’? And then you invent ‘cocooning’ working as a trend forecaster…)

Pádraig is fine, was it not for his femor/hip and the muscle(s) not holding the two together tightly and in place. And the helpless feeling of not knowing if there is anything we could do to help him getting better.

This is not the only problem we have come across since his accident where I thought “this must have happened to other people before, there must be someone with the knowledge and experience to tell us what to do” and then there wasn’t. So he keeps exercising and we keep trying our best to help him. We keep learning and we hope that the hip will get better again.

We are so happy to be together. The weather is getting warmer and Pádraig sits out in the garden almost every day, on sunnier days with an ice cream, listening and contributing to our chats. With summer time starting today, there will be a noticeable longer stretch in the evenings.

I miss the whole family being together and each time one of Pádraig’s siblings calls in, keeping their distance, it’s really nice though necessarily short. About once a week, his friends have what used to be called a videoconference and Pádraig really enjoys taking part in that, helped by one of his sisters. It’s now called ‘Houseparty’ and it’s a ‘group video chat’ by a company called ‘Life on Air Inc.’ I’ve seen it working a little and from a distance, but mostly hear the laughter and animated conversations from somewhere else in the house.

During the week, we tried out what 8D music sounds like. If you haven’t already, try it on Spotify or whatever you use for music, best with headphones. It’s amazing. A bit like 1975 Bohemian Rhapsody on steroids.

We still have to ask Pádraig for his opinion, we’re still trying to find ways for him to take the initiative to intervene – though I wonder whether we are always attentive enough to notice when he (undoubtedly) does.

Pádraig’s carers are thankfully still supporting him and us, being very responsible and diligent about keeping their distance from groups, washing their hand, and following all the other guidelines.

So if ‘cocooning’ was invented in 1981 why do I think it will become the 2020 word of the year?

Because in 1981 it described an action, an attitude, something people chose to disconnect from the crazy world around them, it was something nice and cosy.

Today, it’s a government restriction imposed on the over 70s and the vulnerable “living in their own home, with or without additional support or in long-term residential facilities”, officially since last Friday, but effectively in operation since at least the previous week.

It’s not cocooning, nice’n cosy and by choice.

If you’re over 70, or if you had a severe Acquired Brain Injury, or if you are living in a nursing home, you can’t go out nor should you have visitors. You might find it hard to understand why all of a sudden life around you has come to a complete standstill.

Luckily, I am still under 70. So I went out for a walk in this new quiet, unpolluted, isolated world early this morning. My imagination took me away.

I woke up and heard my mate calling me from a distance
so far that I had forgotten it existed.
It was bright but the cars below our nest
were parked and silent.
It was day but the city was asleep.`
What had happened?

I swam up the river and saw all its turns in the distance
so far that I had forgotten it existed.
The light was shining right down to the river bed
through the clear unpolluted water.
No plastic bags, no industrial waste.
What had happened?

I looked out the port hole and saw the earth’s cities in the distance,
so many more than I had remembered existed.
The clear atmosphere revealing the Earth again
as Major Tom had seen it first.
Smog was lifting, the oceans blue again
What had happened?

Rays of light made its way through the tiny window in my room
so little that I could just make out its deserted outline.
My fingers can’t press the button.
My voice is silent.
Is anybody out there to be with me, to explain
What has happened?

How is Pádraig doing?

Life goes on. He is trying to keep a work-life balance. ‘Work’ being a good rehabilitation programme, ‘Life’ being a good time with family, neighbours and friends.

Pádraig went to a therapy centre in Lindlar/Germany specialising in Speech and Language therapy for some weeks a bit more than a year ago. His rehab programme has continued at home and, since January, in An Saol’s Day Rehabilitation Centre, in the company of other families, supported by a team of enthusiastic therapists, new and familiar ones. He has continued to travel and went to several places around Europe. His friends are visiting and he goes out to meet them. He has been at parties, walks, and some truly amazing fundraisers.

Life has been full of surprises. Some good, some pretty challenging. Most of incredible intensity. I try to learn from all of them.

One day, many years ago, Pádraig asked me to promise him not to never ever tell any of my jokes again, at least not in front of other people, especially not his friends.

I am on my own here, nobody is listening. And, strictly speaking, it’s not even my joke.

It’s an old Jewish joke about Man making plans and God laughing. Like any good jokes, it’s short.

It connects well with a psychological condition described for the first time in the 1970s by Ellen Langer, a researcher at the University of California. Where else and no better time than the 70s.

We all make plans. And not just that. We believe that they will work out as long as we just try hard enough. When our plans by chance then work out it reinforces the illusion that we are in control. It’s what we believe makes up a “happy, fulfilled life”.

Sister Stan and Fr Peter McVerry said last week in separate interviews on Radio One that the current situation demonstrated how fragile our world is. That we now have a chance to re-adjust our views on ‘return on investment’, on growth. On the destruction of our environment, our social fabric and our relationships. That it is wonderful to see how people rally and care for each other. That we are learning how to handle situations today which yesterday we thought we couldn’t even face.

“Social Distancing” is going to be the 2020 Phrase of the Year.

“We are all in this together” is going to be the Lesson of 2020.

When this is over, we’ll all be living in a different world.

I will be taking a short break from the blog due to illness.

It hasn’t been my day.This morning, when I was on my way back to Lindlar a car pulled out of a side street and crashed into me. The brand new Opel Adam I had rented got a big dent in the front and I got a big fright. Luckily, no-one got hurt and I was able to drive the car to the nearest rental station. My family then gave me a lift to a train station from where I got a direct train to the airport. No Lindlar today. I took a direct train to the airport because nowadays it is risky to rely on connections when traveling with Deutsche Bahn. For the day that was in it, I shouldn’t have been surprised that the train broke down just 10 minutes out of the airport, we all had to wait and then change over to a different train.

I’m now sitting in the airport waiting or the plane to take off in about an hour and a half. I don’t want to think about it too much but I’m wondering what’ll happen next.

Even if everything goes right tonight, I’ll be landing in Dublin just before midnight.

Knowing I’ll be traveling with Ryanair, anything is possible. Nothing will surprise me.

This is a classic. A sign on a coffee machine in Germany advising potential purchasers of different types of coffee to use ‘no coins (keine Münzen), only (nur) coins’.

After a short period of confusion, I realised that ‘coins’ in this case didn’t mean ‘coins’ but ‘token’. There is a name for this linguistic phenomenon, you could call it ‘over-translating’ or maybe ‘adapting a foreign word incorrectly’, but I can’t think about it. For reasons known only to themselves, they did not want to use the perfectly adequate word ‘Wertmarke’ and looked for a cool, short, English alternative – and picked the wrong one.

You might have guessed – I am in Germany today visiting a therapy centre I had heard about an awful lot from many people. All telling me that Lindlar was the place to go for Speech and Language Therapy (SALT or SLT). Pádraig is now at a stage where he desperately needs to find ways to communicate in a much more efficient way and where he needs to develop his voice.

And guess what?

The HSE-employed SLTs who had treated him on and off have been off for close to three quarters of a year, I’d say. The last SLT working with him is now on maternity leave with no replacement or cover in sight.

We have been trying extremely hard to find an SLT but all of our best efforts have been frustrated by what amounts to a denial of service. SLTs in both the voluntary and the professional sectors have told us that they cannot treat Pádraig. Isn’t that absolutely amazing, incredible and shocking?

The meeting today in Lindlar was really promising and I hope to meet up with a family tomorrow who I got to know a little and whose son has been treated in the centre for several years.

I spent tonight with my German family. We had a really good night together with good company and good conversation, something to be really grateful for.

This is of no particular interest, really, but it is a curious, even a bit quirky story.

Using words to represent letters of the alphabet when communicating using bad quality radio communication.

The letter ‘R’ is used to acknowledge that a message has been received.

While the British tried to push ‘Robert’, it was the U.S. who pushed ‘Roger’ and succeded – and who established the phrase ‘Roger that’ to acknowledge the receipt of a radio message.

Then, in the 1950s, NATO standardised the words used to represent the alphabet and ‘Roger’ became ‘Romeo’.

But, ‘Romeo that’ doesn’t really work for some reason, wouldn’t you agree?

So what is it that makes us stick to old habits?

Happy 2019!

Just watched a completely pointless movie on Netflix. Close to 100 minutes of the New Year down the drain. But then, not everything needs an apparent purpose. In fact, at times it’s the stuff that doesn’t seem to have an apparent purpose that turns out to be the most valuable.

Here I am trying to write down something worth noting. Whether I did watch a movie or not, and whether it was a movie worth watching, and whether or not it’s stuff that seems to have an apparent purpose eventually turns out to have a deeper than just the ‘apparent’ purpose…. who cares.

What about Pádraig’s day? My day?

Busy: with PA’s and his physio back in action, and a relaxing massage by a very kind and friendly neighbour. Great food. A nap. A walk in the park. Nearly an hour on the MOTOMed. At the end of one of these days, we’re all pretty exhausted. A day that starts before 6am, doesn’t finish in the evening but continues through the night, though much more relaxed.

Anything noteworthy? Not really. A bit like that movie I watched.