What do start, tall, told, and street have in common?

We went through the months and, yes, and of course, he knew it was January.

He didn’t know what date it is today. We reminded him that last Tuesday, 12th, we had a birthday in the family. So if Tuesday was the 12th, what date is it today? 16th. Yes.

Tonight I made a simple dinner. We had it first. And then he had it. Different consistency. But it was the same food. And he liked it.

Then we were talking about the trips we had been on. There was this insanely long, out of this world train trip to Lourdes. Did he want to go again this Pentecost? Of course he does!

It was Pádraig at his best: adventurous, yearning for life, curious.

And bright: great at his spelling.

It’s official.

Today, Pádraig has been discharged from the NRH.

He’s been there for almost 16 weeks to be assessed for a home care package that would provide for help so that he and us could manage at home. That has now been submitted as well and everybody expects a positive decision real soon.

It feels strange, though.

We got to know loads of people in the NRH. Between cooks, doctors, social workers, therapists, nurses, and care workers there were dozens of people looking after Pádraig. Sure, the ‘H’ in NRH gives it away: it’s a hospital. And, as we’ve learned over the past two and a half years, hospitals are institutions with procedures, routines, hierarchies, and all sorts of other difficult-to-deal-with stuff. But, as hospitals go, the NRH is a good place. And as staff in hospitals goes, they’re good, at times even brilliant, at times not what you’d expect. I’m sure I wasn’t (always) like what they’d expected. There were sometimes really difficult situations, there were really deeply understanding moments, and there was even banter and fun. What I appreciate is above the table, straight conversations. I recognise that this is, to an extend, possible, but that there are limitations to this, in a hospital environment. Although, personally, I don’t see a reason for it. Overall it’s such a charged environment, huge emotions, plenty of vulnerable people, loads of on-the-edge stuff, risks, room for mistakes, room for brilliance, room for disaster. It’s a really difficult place to develop trust, even though this is the most important ingredient of a hospital stay. But you know that when you have an accident with your car your insurance demands from you that you never admit that you were at fault. It’s a bit like that too when you treat patients, I guess. The thing is that we all know what works well and what doesn’t. I have been ready to talk about our perspective of things, which might be incomplete and mistaken, but worthwhile considering I would have thought, I have loads of ideas of stuff that can be done, even as things stand, with the existing resources. So, let’s talk, right? There were amazing things that happened in the NRH. Pádraig will, hopefully, be back as an outpatient, after a bit of a waiting time.

Tonight, we “Don’t look back“, though. We look forward to an exciting year when really exciting things will happen. With no boundaries. No restrictions. No ‘that’s the system’. No ‘you won’t be able to change that’. But with power, perseverance, positivity, can-do, love, energy, lust for life, friends, music, travel, Dreamboaters.

Loads of things happened over the past two days.

Pádraig did the equivalence of a one-person table quiz about Kodaline. He refused to answer the first question which was, admittedly, too simple to merit an answer: do you spell Kodaline with at “K” or a “C”. I mean…. He then had all the answers right. Which instrument one of the guys plays. Whether there were from Sallynoggin or Swords. How many of them made up the group. It was incredible to see him remembering all these details.

Then today there was a neurologist assessing him. Loads of therapy. A long day.

Also got some more suggestions for possible space for An Saol’s therapy centre – at least some temporary space, but some hints also pointed at potential permanent space. Will follow up on firm up over the next days.

Met the co-owner of a bike shop who will look around and help me with some sponsorship for the cycles.

Tonight three of his friends came for a visit. Being home makes all this so much easier.

I’m still in awe of his friends. They really are absolutely and utterly incredible people, the likes I’d never met before!

Tired and ready for bed!

I didn’t believe it and, I’m sure, you won’t believe it either. Especially if you live in Ireland.

First, a bit of background information:

Not such a big surprise here. While EU countries cut their health spending per capita by 0.6% between 2009 and 2010 as a consequence of the economic crisis, Ireland cut its health spending by a massive nearly 8%.

But here is the mega surprise: Even after (!) those massive cuts, Ireland’s spending per capita was 2,862 euro – way above the EU average of 2,171 euro AND just below that of Sweden (2,894 euro) or Germany (3,337 euro) which has a much ‘older’ population than Ireland and would, therefore, ‘naturally’ have to spend more on health per capita.

So, Ireland spends as much as Sweden on health care, and not that much less than Germany. Yet, we all agree, including the Taoiseach or Prime Minister of the country, that health services in Ireland aren’t quite what is needed, to say it politely.

What does that mean? – Even a non-expert can draw the conclusion that there must be Massive (with a big ‘M’) inefficiencies in the Irish system. What other explanation could one have to explain that hundreds of people have to spend the nights on trolleys in accident and emergency. Or: why there is NO therapy for persons with serious acquired brain injury living at home – and almost none for those in nursing homes. Nursing Homes for the young ?!

Here’s a task for a new government. Here’s something each of us should tell the candidates who will come knocking at our doors, looking for a vote.

Pádraig is home. But without a home care package approved. Without the equipment he needs approved, never mind being ordered. We’ve been assured that this will all happen soon. In the meantime, we’re driving to the NRH most days of the week to get some hours of therapy for Pádraig. He’s fine, we’re less worried, but we need some routine, some re-asurance, a more regular day.

(Here is the link if you want to read up some details on health spending.)

Days go by and you wonder whatever happened to them. They become months and years. Then you wonder whatever happened to all those years. You start telling stories about the past, how different it all was. The things you worried about almost don’t count, in hindsight.

Pádraig is home.

Two great friends of Pádraig’s came for a visit tonight. Pádraig’s smile when he sees them and hears their voices is contagious. It is brilliant to see him being so aware of what is going on around him.

What he needs is regular and extensive therapy – as do all the other people with severe acquired brain injury.

Tomorrow, An Saol’s letter to politicians will go out asking them for their stance on the issue. It will be supported by the ‘stories’ of three survivors as told by their parents. It’ll be interesting to see the reaction…

Still looking for adequate space for An Saol’s Sara Walsh Therapy Centre. If you can help us finding something, even temporary, please let me know!

This week, serious preparations for the first big fundraising cycle from Los Angeles (Hollywood) to San Francisco (Nappa) are going to start. We will need to plan the route, contact cycling clubs on the west coast and ask for their support, arrange press conferences and meetings (at schools?), and get in touch with the Irish communities on the West Coast – we might even find a celebrity patron! Can you help with any of this?

15 weeks ago, Pádraig, Pat and I were in Kelly’s Hotel in Rosslare, having the most wonderful dinner in a brilliant restaurant with the waiters and the chef preparing the most delightful food for us and especially for Pádraig. Tomorrow, it’ll be 15 week that Pádraig is being assessed. That is considerably longer than the ‘standard” stay in the NRH of three months. – Why it has been taken so long is an absolute mystery.

I, I will be king
And you, you will be queen
Though nothing will drive them away
We can beat them, just for one day
We can be Heroes, just for one day

I’ll keep it short tonight.

Pádraig is ready for his medication to be reduced. No more shakes and no more tremors. We’ll figure out a way to do this.

We continue working on body and mind with Pádraig. We do stretches and ‘mobilisation’ exercises every day and have great hopes to bring the movement of his left arm back to where it was some weeks ago: a straight stretch – or, as the physios would say it: a 0o stretch (it got to 60o last Wednesday). Pádraig is also using the switch again every day. Today he spelled his a four letter word, always using the first two lines of the English frequency alphabet. All really great stuff.

When Pádraig was swimming in Kentucky, he loved a t-shirt that said: “No. I do not play Basketball!” because everybody was asking him that question, as he was so tall. I have been thinking of a different t-shirt (thinking a bit about what I mentioned in yesterday’s blog).

The pledge for the 2016 election candidates is ready and being reviewed as we speak (or write:). It will contain the testimonies of three families underpinning what we ask of the candidates. I hope that we will be able to circulate this on Tuesday.

Next week, I will also start planning the LA-SF fundraising cycle in earnest. – Any volunteers to help with the preparations (PR, social media gurus, writers, video editors, contacting {famous} Irish people on the west coast, cycling clubs etc., project/route management)?

Oíche mhaith!

Just before I went to the bicycle shop today to get the bike serviced and fixed, Pat asked Pádraig, whether I was going to go shopping. No, he clicked using his switch. Then she asked him whether I was going to the bicycle shop. Yes, he clicked using his switch.

When that worked, she asked him whether one of yesterday’s visitors had been in his Irish class. No, he clicked. Was she in his history class? Yes, he clicked. And what about the other visitor. Was she in his history class too? No , he clicked. Was she in his Irish class. Yes, he clicked.

This all sounds a bit clinical, when you write it down. When you see and hear it happening, it’s so amazing, it’s almost beyond belief. So, here he is, taking in what’s going on around him, remembering who he studied with, and which subjects, and there was the health professional, weeks ago, who said, beside his bed, he might have been better off dead. Did he hear this? Did he understand it? What do you think? Who and what needs to be switched on?

At the same time, at the same time he is showing an amazing degree of being awake, of remembering, of understanding, he has problems eating because his saliva has turned into a jelly-like substance. Not by coincidence, or by accident, that doesn’t happen. It wasn’t an issue before he had to take drugs to control the shakes. Now the shakes are gone and I believe it’s time to reduce the medication. We’ll see.

Got a whole long list of possible places for the An Saol Therapy Centre. But no firm, not even a firm-ish trail. Something will have to happen next week.

Talking about next week…. That was the week Pádraig was to go on his second stint in Pforzheim. We had great plans about what he was going to achieve there this time. Instead, we are struggling to straighten one of his arm, trying to keep the other arm ‘clear’, he is on medication he hadn’t needed for the best part of a year, and he is still, at least in theory, in hospital. We had to cancel Pádraig intensive therapy and continue to hope that all will be sorted out within the next few weeks.

Change will come. It has to.

There is an infinite list of hay-que-hacer things, stuff that needs to get done. One thing more urgent, more important than the other. Realistically, there is only a slim chance that even a fraction of the things that need-to-get-done so urgently and importantly will get done. It feels like living in the eye of the storm. You know you are surrounded by devastation but you find yourself in a place of unreal tranquility, managing, for the moment, to ignore what’s going on around you.

The only chance I see is that the storm won’t hit all at once.

Today was the day of the funeral. Pádraig and I stayed at home. We had a person coming in to test some equipment with Pádraig. A friend called in with divine croissants and unbelievably nice carrot  cake. In the evening, three of Pádraig’s friends called in.

Could it be that the storm just passed?

9 family members affected by severe brain injury got together tonight and changed how their loved ones are being treated, Together, they will ask the candidates in the forthcoming election to pledge their support. Together, they will build and use adequate neuro rehab therapy services. Together, they will take responsibility and show leadership.

On the ‘home front’, today was exhausting. We hosted a massive training session for Pádraig’s PAs, directed by NRH experts, with some input from community services and Pádraig’s GP. There is a rumour that this was the last big s.tep to get Pádraig a home care package. It was a good, yet very long day

I am utterly and completely exhausted but know that I will remember this day for a long time.

Not least, because this day, one year ago, a truly courageous doctor in Hamburg’s University Hospital, against the explicit advice of Pádraig’s neurologist and the whole rehab team, all of whom had branded us hope-against-hope parents, who wanted to convert the tracheostomy into a permanent ‘feature’, took out Pádraig’s tracheostomy and got Pádraig a bed, and us a reclining chair and a mattress on the floor for nearly two weeks.

If it had not been for us pushing and pushing, and insisting and insisting, against the neurologist’s and his team’s expert opinion, spending sleepless nights with fear leading up to this day, and more sleepless nights after this day one year ago – they had told us he might choke without the tracheostomy -, had it not been for this courageous doctor in the UKE who supported us, against the established and stated view of the ‘experts’, instead listening to us, Pádraig would now have a surgical, permanent tracheostomy.

Time to take responsibility ourselves.