We drove over to the NRH today with Pádraig so that he could have a go at their Erigo machine – the one that puts a person upright (almost) into the vertical and makes their legs move, mimicking a ‘walking’ motion. Afterwards, we had lunch in their restaurant. It was a really nice day out. The nicest part of it was that we were able to bring him back home afterwards.

His TV now has internet and he was watching Bell X1, the group he will be seeing in March! Remember this? Paul Noonan sending a message to Pádraig after his accident…

Since yesterday, Pádraig’s shakes seems to have virtually disappeared. He is still taking anti seizure medication which we will hopefully be able to reduce and then stop altogether, once he has fully recovered from this episode. Relieve is not the word to describe what we feel.

We have also been planning. I like planning! And making the plan happen!

We’ve been planning how to start with some basic services for An Saol and to whom which services we could provide. In addition to fundraising and advocacy, An Saol really needs to be able to show what good care and therapy could look like. I really hope, we’ll be starting soon doing this.

Finally, here is another piece of great information from The New Yorker, LARISSA MACFARQUHAR writing about the Ford Foundation:

The urge to change the world is normally thwarted by a near-insurmountable barricade of obstacles: failure of imagination, failure of courage, bad governments, bad planning, incompetence, corruption, fecklessness, the laws of nations, the laws of physics, the weight of history, inertia of all sorts, psychological unsuitability on the part of the would-be changer, the resistance of people who would lose from the change, the resistance of people who would benefit from it, the seduction of activities other than world-changing, lack of practical knowledge, lack of political skill, and lack of money. Lack of money is a stubborn obstacle, but not as hopelessly unyielding as some of the others, and so would-be world-changers often set out to overcome it. Some try to raise money, but that can be depressing and futile. Others try to make money, but it’s hard to make enough. There is a third, more reliable way to overcome this obstacle, however, and that is to give away money that has already been made by somebody else, and has already been allocated to world-changing purposes. This is the way of the grant-makers of the Ford Foundation.

Looks like we’ll have to get in touch with them!

Still at home, still worried about Pádraig’s tremors – though they have got better today. If only they’d stopped altogether. Therapies will resume in the NRH tomorrow. We have also decided that we will get a bit more pro-active and make sure that Pádraig will have access to the physio equipment he requires. I think I mentioned that the HSE office that will submit Pádraig’s application for a home care package (once they have reviewed some aspects of it), will be closed until 04 January. No date given for the final submission. No date given for a decision. What they have made clear is that they will require more training on how to look after Pádraig.

Read.

Two days ago, The New Yorker published an overview of the most interesting psychology papers of 2015 (with links to the articles).

In between “Estimating the Reproducibility of Psychological Science” and “Facilitating Psychological Resilience Through Boys’ and Girls’ Closest Friendships”, there is “What Works in Inpatient Traumatic Brain Injury Rehabilitation?” (from Archives of Physical Medicine and Rehabilitation).

They are saying that, finally, “traumatic brain injury, or T.B.I., is becoming a topic of conversation“. They are also saying that “TBI is a huge problem” – well, we knew that much already. But The New Yorker also presents figures: “in 2010, an estimated 2.5 million people in the USA sustained such a TBI, and between 3.1 and 5.3 million were living with long-term, or even permanent, disability due to its effects”.

They highlight that despite the huge effect TBI has on the population, TBI “has been understudied” until recently. There is now an entire issue of Archives of Physical Medicine and Rehabilitation dedicated to TBI,  examining the effects of traumatic brain injury and possible future treatments.

Some of the findings are dispiriting, they say because it turns out that “we really don’t have a good sense of what works to treat these injuries, and a kitchen-sink-like approach remains the norm” – to be honest: I could have told them so. Apparently, the best predictor of your eventual outcome seems to be the severity of the injury, rather than any particular treatment you might receive.

BUT: some evidence is promising: Rehabilitation therapy, especially therapy that requires demanding physical or mental activity, does seem to help patients regain function.

Again – I could have told them so without expensive and complicated studies. The Romans already knew that “mens sana in corpore sano“, meaning that only a healthy body can support a healthy mind – therefore, we should strive to keep our bodies in top condition. Now: here is, again, the scientific evidence. It’s not really drugs, it’s not really ‘maintenance’, we don’t really need doctors (primarily), we’re not talking about an illness. We are talking about an injury that requires therapy, and it’s especially demanding physical or mental activity that does seem to help patients regain function.

Please pass this on. To health planners. To Nursing Homes. To the HSE. To therapists. To doctors. To parents. – And than make change happen!

Read.

PS: You just have to concentrate as Rey does in Star Wars VII, use the Force, keep at it, and you won’t believe yourself what you can achieve:

Rey: [Trying to use the Force to compel the guard] You will remove these restraints and leave this cell with the door open.

Stormtrooper: What did you say?

Rey: You will remove these restraints and leave this cell with the door open.

Stormtrooper: I will tighten these restraints, scavenger scum!

Rey: [Concentrating harder] You will remove these restraints and leave this cell with the door open.

Stormtrooper: I will remove these restraints and leave this cell with the door open.

[he does so]

Rey: And you will drop your weapon.

Stormtrooper: And I’ll drop my weapon.

Dear Mr Couto,

We are sitting by our son’s hospital bed. He is having ongoing seizures. We spend most days beside his bed. Hospital staff do not have the time to attend to all his needs so we do it ourselves.

We don’t know if you ever wonder what our life is like since the day your truck hit Pádraig? We think you probably do, and that was the reason we wanted to meet you (well it was mostly Pat). We know what happened the day of the accident as of course you do. And we don’t think you ever actually lied, that is why we sort of felt sorry for you and could not hate you with instinctive venom towards the one who has destroyed our beloved, and precious child. You took your eye off him as you were overtaking and noted the car turning on to the main road. The first thing you saw or heard, as you stated, was the bang. That bang you caused has utterly devastated not just our son’s life, but our life, our daughters’ lives. It turned upside down our family life and the plans we all had. It took away all Pádraig’s dreams, hopes and most of life’s pleasures that all young people long to enjoy.

The pain a parent feels from the moment their child’s brain is destroyed is impossible to put words on. You cry on the inside all the time, and often on the outside. We grieve for our son every moment of every day and yet we can still hug him and console him. We are bereft and yet we are not.

You can’t imagine what a wonderful young man he was/is. (We never know what tense to use when we are talking about him, and have to correct ourselves when we use the past tense.) Only someone as strong as Pádraig would have survived the accident. He continues to try, he never gives up. He mostly understands when we speak slowly and simply but he has minimal control over his body. He eats pureed food and receives liquid and medication through a PEG. But he can indicate ‘yes’ and ‘no’ with his foot and with his tongue. He needs round the clock care but we are determined to bring him home to live with us and to get him the therapy he needs. To try give his life some meaning.

Before we left to go to Boston last April we asked Pádraig if he forgave you for what you had done. He said yes (with his tongue). We asked again later and he gave the same response. This might give you some idea of the extraordinary person he is.

Meanwhile your life continues, your boys have their dreams and financially you have not even been affected. We believe emotionally you probably are; had either of us destroyed your child’s life, and caused you and your wife the pain we endure, we would find it hard to reconcile. You could have lied, as the police mounted what we see as a huge cover-up, determined to prevent you from going to prison, but you did not. Maybe that brings you some peace of mind. But you should have had the courage and decency to meet us. We did not want you to go to prison, although we hold you responsible; and we know Pádraig would not have wanted it either. There was no vengeance in him.

This is the third Christmas since the accident. Every year we wonder how you are spending your Christmas. We spend ours at our son’s bedside.

PS: This letter was written a few days ago, but never sent. Today, it’s exactly two and a half years since your van hit our son.

Well, here it is. The original Dreamboat. Mounted and behind glass. Ready to go to its new home: An Saol.

Spent half of the day maintaining my furniture building skills putting together a new press for Pádraig. It’s not quite finished yet, you’ll have to wait for the picture until tomorrow.

I had never realised how therapeutic it is to put together an IKEA press. Not only does it teach you patience challenging you to do the impossible based on cryptic-not-is-the-word-for-it instructions, it also opens your mind so you see things much clearer.

It helped me to see how we will approach Pádraig’s current health issue, the tremors; the issue around the delay of the submission to the intensive care package office within the HSE as well as the equipment and care plan.

If help is not forthcoming, adequate and timely, we’ll organise it ourselves. Everything else is a waste of our most precious resource: time.

We’ll get the Dreamboat going full steam ahead!

In the beginning was the Word.

I always really loved that line. When I heard it this morning at mass, I knew that this was it. It was a moment of great clarity. We are together. We are alive. And we have purpose. What more would you want to be happy?

What has come into being in him was life, life that was the light of men;
and light shines in darkness, and darkness could not overpower it.

When it’s Christmas, people think about different things, the have very different, often very strong, feelings about these days of celebration.

For me, Christmas is about the meaning of life: out of the darkness emerges light that darkness will never be able to overpower. The short days and long nights are over. A new life is born so powerful that it will transform us and the world around us. In a years time we’ll look back and be amazed of what our energy, enthusiasm, compassion, and love will have achieved.

This has been the most amazing day, all of us being back together in the house, with the tree, the Christmas dinner, some friends calling in, the fires burning, keeping out the cold. This was the first Christmas without my mother being around. We are missing her very much.

Over the past weeks we were as busy as we hadn’t been for a long time. Sounds strange, and I found it interesting, to see that we could actually get busier than we already were. So we concentrated on the most important matter of getting Pádraig home. We wrote no Christmas cards and I managed to get out to buy presents last night when the only shop opened in town (for half an hour) was Hodges Figgis – so everybody got a book:)

Today,everything went fine until I got hungry later in the day. I felt like eating something sweet. But not another ‘Roses’. Please! A bit of bread with something sweet on it. As I was looking around, I saw this jar of Nutella sitting on a shelf in the kitchen. I don’t particularly like Star Wars, and don’t really know that stuff well – but this evening there was one of those protective fields around that jar of Nutella. I was just getting up, walking towards it, hadn’t lifted my hand yet, when I felt as if something had just struck me. Maybe it was just the sound of this voice telling me to not even dream about getting anywhere close to this jar. In the end, I settled for a turkey sandwich – we’ll have plenty of them over the coming days, so why not start today…

Pádraig seems to be getting better by the hour. He is so well in his familiar surroundings, with his family, in his own room. Whatever it is that has been bothering him over the past week seems to disappear. He is sleeping really well during the night, and he is eating much better again. Hopefully, we’ll be able to go for a walk tomorrow!

I might even go for a bit of a run myself. That is if I’ll manage to put one foot in front of the other after all this absolutely marvellous Christmas food.

Pádraig is at home with us tonight for Christmas

It is almost beyond believe. After three years, for the first time, Christmas together again.

There were friends calling in, neighbours knocking on the door, there was chat, and happiness all around.

Happy Christmas. Nollaig Shona. To all who made this miracle happen.

Dear Santa,

You might not know me because I’ve never been in touch with you before. You know yourself, writing letters to you is not considered to be an adult-thing to do. Because adults are supposed to be all serious, grown-up, matter-of-fact, and be able to take responsibility for their own life – and their own presents. When I was young enough to write letters that in Ireland I would have sent to you, I sent them to the “Christkind”, the baby Jesus, because it’s the Christkind who brings joy (and presents) to the Germans on Christmas Eve. (See, Germans are always a step ahead.) Which must be great for you – knowing that 80m Germans will be well looked after by the Christkind while you then just have to look after the rest of the world on your busiest night of the year.

We’ll keep going – And one day, we’ll make it to Alaska! Promise!

We have three children, two daughters and one son, all of them ‘grown-up’. You must remember them, because they always wrote letters to you and left notes for you and Rudolf, together with a drop of the auld “uisce beatha” for you and a carrot for Rudolf.

The reason you didn’t hear from them over the past two years is not because they deliberately stopped writing or because they didn’t believe in your magic anymore or because they were naughty or anything like that.

They didn’t write to you because one of them, Pádraig, our son, was hit by a car two and a half years ago when he was 23 years old and suffered a devastating brain injury. Since then, their life changed beyond recognition. We had to bring Pádraig to Germany to get treatment not available in Ireland at the time, so we weren’t even here (and would have been looked after by the Christkind). We weren’t even really living together as a family. And the whole time, we were fearful of something even more terrible than the accident could happen to Pádraig while he was in different hospitals.

We are back this year and you can only imagine how happy we are to be back together, in our own house, this Christmas. Pádraig had a bit of a setback last week which upset us all terribly, but we hope he’ll pull through this, will be with us here for Christmas and will just continue to get better and better and better. We have learned to be patient and grateful for every tiny bit of improvement.

Since we are back this year, and just in case our ‘children’ forgot to write to you, here is what I would like for Christmas.

Please make sure, Santa, that Pádraig gets better again, gets out of the hospital, and recovers to a point where he will regain some of his independence. His is such a great person! He has struggled so much, he has shown us that he really really loves life, even if it is so much more difficult for him now. He deserves all the help you can get him to achieve some independence and quality of life.

His two sisters deserve a huge present. It doesn’t have to be anything material or very expensive. They are unsung heroes because when everybody worried about Pádraig, they were there, in constant fear of loosing their brother, being separated from their parents most of the time, having to organise their lives on their own, and they demonstrated incredible strength and faith in their brother.

Please bring something really nice to each member of our family – they have been our anchor. Without them, our lives would have collapsed. Again, it doesn’t have to be big, just something they want in their lives, something that they have been looking for and couldn’t find themselves.

His friends and our friends deserve the biggest present of all: love forever. You know, we are all so worried about the future, what might come, how we will deal with all the problems facing us as a society. There’s no need to worry if we can just manage to allow Pádraig’s friends to run the future. In my life, and I feel as old as you look, Santa, in my life I have never seen or experienced so much love coming straight from the heart. And the effect of that on Pádraig, on us, and on everybody who has been looking after him has been tremendous.

We were not able to get chocolates and stuff like that for all the people who have been caring for him over the past year in hospitals, on his trip to Lourdes, in rehab centres, and at home. I’m sure your helpers made sure they got loads of sweet things anyhow. But if you could, with your magic, spark their enthusiasm to continue to work from their hearts with empathy, to do the best they can do for their patients and clients, I think that would be the best present for them.

I hope you don’t mind I have a few wishes myself: please give the best wife of all the strength to continue being the rock in this often very stormy sea, let her feel our love even on difficult days. Give her and myself the calmness, the rage, the balance and the persuasiveness, the sharp minds and the physical strength to help Pádraig on his incredible journey; help us to find land or a house, and money to build An Saol.

Finally, and I know one should never ask for too much because that would be greedy, Santa, but if there was any chance, I would like to travel with Pádraig and see the world because that is something we all have always enjoyed so much. Maybe we could try a trip in Europe, but the biggest dream of all is a journey in an RV to see Alaska. A friend of Pádraig’s gave him a present of a guidebook to Alaska. I’ve been reading him out of that book and I know he would really like to go. I promised him to go and will have to keep that promise.

Sorry for this never-ending letter, Santa. You must be so busy these days and the last thing you need is adults writing these loooong letters to you, rambling on like there was no tomorrow.

You know, we need every help we can get to make An Saol, a meaningful and exciting life, for Pádraig and all the other people with severe brain injuries as well as for their families, a reality. So please don’t look at this long list as being greedy. I believe in you and in your sincere and very deep-founded goodness, and I’ll be happy with whatever help you can give us.

Happy Christmas to you and Mrs. Santa!

Yours forever,

Reinhard

Towards the end of a difficult day, we agreed Pádraig was coming home on Christmas Eve.

What a Christmas present that will be!

The shortest day of the year. Time to rise again.

This is one of these long posts. A note to myself, no funny parts to it, probably boring, a bit repetitive, highly subjective – so hang in there and be patient. Or stop right here and check in again tomorrow.

15 years ago, I drove my sister from Tating to Hamburg every day over several weeks to get treatment for her lung cancer. Most of the time she was so weak she couldn’t say anything. She just sat in the back of the car, quiet, while I was driving. We were together, an invaluable time. I put on music from a CD (remember CDs?) I found inspiring, uplifting. One song that I will always associate with these journeys is “Rise” by Gabrielle. I had to think about those trips to Hamburg and the song today.

The shortest day of the year. Time to rise again.

12 weeks ago today, in the early hours of the morning, Pádraig arrived in Rosslare, having travelled from Pforzheim, by car, with an overnight stay, almost 1,000km, and having spent the night on the ferry. A dozen of his friends were at the famous Rosslare Harbour Roundabout with flags and placards welcoming him back home. We went to the brilliant Kelly’s Hotel where Bill Kelly made sure we all got the best of Irish Breakfasts. Later that night, Pádraig had dinner with us in the hotel’s restaurant.

He had been living with us since January, he had been staying in Pforzheim for six weeks where he got up every morning at seven to start 5-6 hours of therapy every day. Where he stopped PEG feeds altogether. Where he was standing 1-2 hours, sometimes more, every day. Where he went to museums, garden shows, open air concerts, shopping and wine festivals.

None of that was easy. But this is where we were 12 weeks ago.

The HSE needed Pádraig to be in a hospital to be assessed for a home care package and proposed Beaumont. Thankfully, the NRH admitted him. I thought he would be there for a week, maybe two. Maximum four, at a push. Because: how long could it take to assess Pádraig?

Really good things happened in the NRH: he got a much better wheelchair, he was seen by excellent staff, he made great progress in relation to communication, and we all are really excited by the possibilities offered by electronic assistive technology (EAT) introduced there.

He had about three hours of physio per week, around two of OT, maybe three hours of speech and language therapy. During this time, he spent about half an hour, maybe twice a week, in the Erigo, a gadget that is a bit like a tilt-table with leg movement. That has been, more or less, the extend of his physical exercise, apart from the time we put him into the MOTOMed and did exercises with him ourselves.

Early last week, Pádraig needed to be given anti-seizure medication. That was increased over the week. It made him so sleepy that he hardly ate over the weekend. And, he could not come home but had to stay in the NRH.

There is no discharge date from the NRH; we hope he’ll be able to come home over Christmas, but don’t know; the information needed for his intensive home care package application is now complete (since last week); but – parts of it will have to be re-assessed before it will be submitted to the relevant office, some time next year; that office will then decide on that application; nursing staff will have to be trained and more training is required for the carers; we have no delivery date for the equipment; I have asked for a copy of the intensive home care package application and was told the HSE would come back to me on this.

In the meantime, we had to cancel the four weeks of intensive therapy in Pforzheim we had booked for January because there is just no way this is going to happen now.

I spent this morning making enquiries and appointments. I managed to get an appointment with a rep who will assess Pádraig for an EasyStand tomorrow; I found out where to buy a tilt table that will be delivered by 11 January; we made enquiries about getting a MOTOMed.

When you feel flattened by the weight of dependency, the needs and plans of others, it’s time to rise again.

Today. The shortest day of the year. Time to rise again. Tomorrow.

Pádraig is better, not as before (yet), but better.

I am tired and ready for bed.

Sunday.