Grain


How long it’ll last, nobody knows. That’s true for most things in life, even life itself. It’s especially true for those resolutions I adapt from time to time. (I’m sure I’m not alone here, am I?) But I am determined to do more to live a healthy life. Because I want to live a long, long life. Kinda have to, it seems…

Anyhow, not only have I started to ‘run’ again (5k this morning ending up in a big sweat) but I’ve started to eat ‘green’ stuff and fruit as never before – for the last three days:) Along with fish oil and chia seeds (apparently the “super food of the Aztecs” – though they’re not around any longer…)

Though I’ll make an exception tomorrow. Can’t wait for that coffee morning with all the nice cakes and tea and coffee and, above all, brilliant company!

We walked into town today and bought more ‘super food’, including bulgur, couscous, and quinoa. It all felt really healthy:) Now we just have to eat it. (Also bought a bit of steak, just in case.)

On the way back we got the bus. Pádraig had been on the bus here in Dublin a few times. For me, it was the first time with him. I had heard so much about how difficult it was to use public transport in a wheelchair. Glad to say that our experience today was really, really good. People, including the bus driver (!), could not have been more helpful.

Versions

Is what I’m writing here a true reflection of my life? What I feel? What I do? How I am and how we are getting on?

Certainly not.

There are organisations who do not want to be named. There are institutions who do not want to be criticised. There are individuals who do not want to be mentioned. And there are feelings I do not want to or I cannot share.

So what am I writing about?

A kind of sanitised version of what is happening? An account of how well Pádraig is doing? A very optimistic view of how An Saol is developing?

We were talking today about of how most of the news in Ireland is bad news: scandals, murders, accidents. And how, when we were in Cuba many many years ago, all the news were positive: achievements, success stories, stories of courage and accomplishment. I think, at times, what I am writing is closer to Cuba than it is to Dublin.

Will I change or just continue to write up a sanitised version of what is going on? What would you do? What makes the most sense? Does either version make sense writing about? Reading about?

Maybe versions of life are just that: versions? Always…

LegUp

Imagine lying on your tommy with your feet straight up and your toes pressed against the floor. Now lift up your knees from the floor and stretch your leg. Try doing this a few times. Easy? – I know it wouldn’t be easy for me. That’s why we were all really delighted when Pádraig was able to do this first with his left, then with his right, and finally with both of his legs simultaneously.

What a fantastic achievement!

You will have heard of court settlements where the judge makes an award to an injured person based on their requirements established during a professional assessment. These requirements often include home care, therapies and equipment.

We managed to get an assessment from the National Rehabilitation Hospital for Pádraig’s home care needs (washing, eating, dressing etc.), hour by hour, day by day.

For some unknown reason, and although we asked several times, they were not in a position to supply the same for his therapy needs.

So today, I have started to look for people who have got a professional assessment of their therapy needs – just to see what that might look like. Haven’t been successful yet – so if you know anyone who had that done, please get in touch.


And, of course, please do not forget to pass on the note about next Sunday’s Coffee Morning in Marie’s house (85 St Mobhi Grove, Dublin 9, 11am-3pm), the annual fundraising effort and meeting of old and new friends of “Caring for Pádraig”.
See you there!


 

Coffee Morning – See you this coming Sunday!

Join Pádraig in Marie’s house for the legendary annual gathering!

Invite your family, friends and neighbours to drop by!


The coffee morning organised every year by Marie since Pádraig’s accident is legend. This year Pádraig will be able to meet all his friends and supporters for the first time in person. Please pass this invitation on to friends and family. Marie expects to have a full house and garden!

The proceeds from this coffee morning have made it possible for Pádraig to avail of equipment, therapy and rehabilitation that he would otherwise not have had access to. The fact that he has recovered as much as he has is in a big way due to the tremendous support channeled through this annual gathering and the incredible effort Marie and her family have made.

And counting…

This is one of these occasions that could make you terribly sad, or it could make you really happy. I know it made Pádraig really happy. He spent the evening at a going-away party of one of his best friends, in the middle of a crowd of people who he loves and who love him.

I was happy. Unambiguously.

Today, I was also happy because Pádraig managed to show us just another example of what he is capable of.

And if you think about it. Wouldn’t it be great if there was a professional who could develop and encourage and support him in developing and recovering even more? Putting it the other way around. Is the fact that there is no pro to help him recover even more an absolute scandal? If he can do this on his own (and a little bit of our help) – where would he be with the right kind of support?

Finally, here is the poster for this coming Sunday’s coffee morning. Please feel free to pass it on to anybody you know and who might be interested to join us!

Optimistic

We’ve had a really nice, quiet afternoon and evening. Relaxed, good-humoured, assisted by one of Pádraig’s carers and the regular ‘Monday evening with Pádraig’ visitor, back from holidays.

It was almost beautiful. Something not to be disturbed.

Of course, we know, I know and you know too, that life is not like that, not like that at all. But this afternoon, this evening, we enjoyed the moment.,

Someone I talked to today asked me three times whether I was positive about the future of care for survivors of brain injury. I am, I answered, in situations where you and I, people who truly care, are in charge. Because we will not tolerate mediocrity.

Large systems, large institutions, develop a dynamics of their own and are difficult, if not impossible, to control. And while I care about these, I am not so optimistic or positive about them. And I wonder whether they can be changed at all.

But about what we do, I am a Dreamboater. Not just optimistic, but convinced that, no doubt, no doubt at all, we will succeed in what we believe in: Compassion, justice, transparency.

We will not allow people with a severe acquired brain injury to be left behind and to just rot away or being treated badly, just because they cannot defend themselves. No way José:) Load and clearly and unambiguously.

Iron(wo)man

Honestly? I’m jealous:) A 1.9km swim, a 90.1km cycle, and a 21.1km run – and all of it in a super time!

It was Pádraig’s older sister who, today, became our family’s first iron(wo)man. And she did so well, it was just fantastic. And inspiring. Really.

India

We thought all day that today was Sunday. That’s because yesterday, Friday, was like Saturday. We took off in the early afternoon, had a nice few hours together, and then had that dinner. Late breakfast today, followed be a long walk along the sea, and a snack and a drink in what could be one of the nicest restaurants in the country, with some adjustments.

It turned out that the restaurant served Indian food with some of the most amazing Indian yoghourt drinks, Lassi Mango. And it turned out that Padraig had his first true Indian dish  – and he really did enjoy the experience.

Trying to get a few hours sleep before bringing one of Padraig’s sister to Dun Laoghaire at 5:30 for the challenge of her life. The Dublin Ironman.

Together

We’re on a family night out. And where else would you go but up North?

Being away together, even for a night, is just magic. The idea and the reality. There were many times when we were not just in sheer terror and fear and shock and awe thinking that we might loose Pádraig, we were also split up between Dublin and Hamburg because there was not adequate treatment for Pádraig available in Dublin.

Back then, we were not sure how much of his life, how much of our life would continue, could go on.

Today, I am pretty worn out, weather-beaten, raw inside from wounds that will never heal, but determined and focused and hopeful that Pádraig will continue to have a life worth living and that he will show us the way we need to go to support him and those like him.

Today we are all together, the whole family, in a nice hotel and lovely surroundings, enjoying ‘a night out’.

I’d never had thought I’d be so happy to be up North!