Miracles

Pádraig didn’t get up, he did not throw his wheelchair into the Gave and walked away. The thing is, miracles ain’t happening like that. They are more subtle and they take their time. Sometimes, a miracle happens right in front of your eyes and because you’re so busy or distracted, it passes straight by without you noticing that it happened.

Pádraig is really happy here. He really enjoys the company of all the exceptional, beautiful people who are helping him to get dressed, to eat and drink, to attend the events, and to get back to bed at nighttime. People who tell him about their lives and who talk to him in Irish. It’s just the first day today and the only time that I have to be there with him is when he’s getting up in the morning and when he’s going to sleep in the evening. In between, what I am doing is not more than checking in with him and his crew.

After one day, that is an awful lot, both on behalf of the carers who have the confidence and Pádraig who has the trust.

In my mind, this is (another) slow-moving but highly significant miracle.

There are miracles happing all the time. We just have to open our eyes and our minds to notice them.

Back in Lourdes

Why would a flight from Rome to Lourdes cost €101 and a flight from Lourdes to Rome just €100? Why don’t have planes a section for wheelchair users, along the lines of this airline where a wheelchair can be brought in right beside the front seat, actually into the row itself. because the front row design is so generous.

We have arrived in Lourdes after a long, long journey. Tired but looking forward to tomorrow. Pádraig is really enjoying the trip so far. Though we all miss Louise.

PS: I think the reason for the price difference between the flight back to Rome is that by quoting €100 for both flight it might have looked as if the €100 were the return price. What do you think?

Subtle

The An Saol Project is making progress. Looks like we finally found premises that are half-way affordable. Next steps are planning permission (change of use), fire and disabled access certifications. We will need to make some modifications to the building but will keep those to a minimum.

We really do need to get the premises up and running as soon as possible. It is a great pity that the old tabacco factory we had planned to refurbish won’t work out: the amount of refurbishment work that needed to be done would just have taken too long and would have been to expensive. Hopefully, we’ll be luckier with this new, more modern building.

I received an invitation to join a good friend to give a talk at RehaCare, Europe’s largest rehabilitation services and equipment exhibition taking place every year in October in Düsseldorf. It’ll be a matter of leaving early and returning late, on the same day. Not really looking forward to the long day, but to the visit and the fair.

Thursday is one of Pádraig’s physio days and as almost always, he manages to do something he hadn’t done before. Nothing major. Rather subtle. Which makes it almost  more spectacular. Today, he was lying with his tummy on a matt on the ground, propping himself up on his elbows while one of us was supporting his head. With his feet rectangular to his legs and his toes tug into the ground he lifted up his knees and straightened his legs. Try it. It’s difficult. Try it a few times:)

In the afternoon he often goes for a spin on the MOTOmed stationary bicycle. For some time now he has been cycling by himself, without the support of the built-in motor. But, today,when he was finished, for the first time he managed to get his feet and legs off the pedal all by himself.

Tonight, Pádraig went to see Irish comedian Dara O Briain. A really good friend had given him two tickets for his birthday before the summer – and there was quite a bit of competition for the second ticket. His cousin on visit from down under won. Pádraig really really enjoyed the gig!

In the Firing Line

Mens sana in corpora sano. The Romans knew that physical exercise is an essential part of mental and psychological well-being.

Today, Fiona Bull of the World Health Organisation (WHO) presented on RTÉ‘s “Morning Ireland” an evidenced-based study just published in The Lancet Global Health Journal that confirmed what the Romans had discovered 2,000 years ago and put into five memorable words.

Here is how the modern scientists put it, having conducted a world-wide study of exercise levels: “Insufficient physical activity is a leading risk factor for non-communicable diseases, and has a negative effect on mental health and quality of life.”

Apparently, more than 1.4 billion adults are putting themselves at heightened risk of deadly diseases by not getting enough exercise, according to the WHO. The study found that a third of women and a quarter of men worldwide are in the firing line for killer conditions such as heart disease, diabetes and cancer unless they up their physical activity.

What can we do about this?

The WHO recommends each adult do at least 150 minutes “moderate-intensity” exercise – such as brisk walking, swimming or gentle cycling – each week, or 75 minutes “vigorous-intensity” activity – such as running or team sports.

Why do I think this is important?

Well – if the lack of physical exercise has such devastating effects on a person, and if this has now been proven by a large, world-wide study published by The Lancet and endorsed by the WHO, and if physical exercise is denied to a person with a disability, such as a very severe acquired brain injury, who cannot exercise without help – then, in my mind, the denial of that exercise amounts to knowingly put this person in the “firing line for killer conditions”. What if a person died in this “firing line for killer conditions” ?

According to information on the website of the Law Reform Commission, the following is the current law on murder and involuntary manslaughter: “Murder occurs if a person intended to kill, or cause serious injury to, another person who dies as a result. Murder convictions can include situations where a killing was planned in advance; where the victim was knowingly shot; and where the accused is aware that the natural consequences of their actions would lead to death.” And: “Gross negligence manslaughter (is) where the death arises from a negligent act or omission by the accused involving a high risk of substantial personal injury.”

Pádraig had a good day today. Tons of conversations and interesting banter. When I didn’t hear the door bell, he turned his head towards the door to get my attention and to let me know that someone had called. Pretty amazing stuff.

Tomorrow, we’ll be getting ready to travel to Lourdes where we’ll be from Friday to Wednesday of next week, together with other pilgrims filling two large planes. Because of the railway strike in France the summer, we didn’t make it to Lourdes on the German pilgrim train. So we are really looking forward to go to Lourdes with Pádraig for a few days of.great company and spirituality, to get out of the firing line, and to re-charge the batteries for the months to come! And we are so grateful to the brilliant people who are making this trip possible.

WalkInWater

Did they notice what was happening? On the way towards the lift that would help Pádraig to get out of the water, an elderly lady said that she so much hoped that Pádraig one day would swim as he did before and that she was praying for him. I was wondering, had she noticed today that her prayers were being heard and answered?

When Pádraig stood at the edge of the pool in the water, holding on to the side bar, with me just supporting his head, I had an idea: what if the carer who is coming with us swimming would stand in front of Pádraig, what if he was holding both of Pádraig’s hands to help him with his balance, what if I just supported his head from behind, and what if he then tried to walk across the pool, one step at a time moving his feet forward one after the other, shifting his weight from one side to the other, what if he reached the other side (almost) completely by himself.

Not only did he make it to the other side, he made it back as well.

It was spectacular.

And I was wondering whether anybody in the pool, apart from us, realised what they were witnessing.

Probably not. For them, it was a normal Tuesday afternoon in the pool.

History

There is a widely held belief that the withdrawal of live-saving measures, and what withdrawal of food administered via a PEG for someone who is going to die of an injury or illness and does not have any prospect of recovery. (Here is a paper in German discussing the topic.) Like in the case of someone in a permanent vegetative state.

In the UK, changes introduced in legislation recently mean that “judges will no longer need to be consulted when doctors and relatives of patients in a vegetative or minimally conscious state agree life-support treatment should end”.

I can only speak for myself – when Pádraig’s accident happened I was so dependent on the advice from doctors that I would almost have followed whatever they recommended. Had I done this, Pádraig would not be with us today.

A German judge once explained to me that a thorough, independent hearing guided by independent experts was necessary in all cases where the life of a patients was involved. This, she said, has to do with our history.

Secret Garden

“If you look the right way, the whole world is a garden”, Mary concludes in the “Secret Garden“. It’s “the one place where miracles grow”.

Although the door to the secret garden was locked today and guarded by a fierce hound, the garden we were privileged to spend a few hours in today was full of beauty and magic.

There were people there who had gone to school with Pádraig, there were many old friends, and there were people Pádraig and us had never met before.

They had all been invited by Marie and here family who had worked for months to make this day truly special.

Many people had made cakes and sandwiches, many had brought in gifts for the great raffle. All to raise funds for “Caring for Pádraig”, a fund set up and managed independently from our family to support Pádraig’s rehabilitation,

It’s worth remembering that Pádraig does not receive any rehab therapy at all from the HSE. Without the incredible efforts of Marie and her family, without them organising an annual fundraiser, Pádraig would not have made the progress he has been making.

So on behalf of Pádraig and my family, I would like to thank Marie and her family and all of Pádraig’s friends (old and new) who spent time preparing today’s wonderful coffee morning and who donated so generously to the “Caring for Pádraig” fund. Rest assured that every cent will be spent directly to support Pádraig’s rehabilitation programme which could not be delivered to him was it not for your generosity.

Today, the doors to the secret garden were wide open and everybody was able to discover “the one place where miracles grow”.

Thanks you to Marie ad here family and thank you to all

Only one of us could join Amanda’s family this morning to remember her life and to say a final good-bye.

It was Tommy who offered what must have been one of the best and most moving eulogies ever.

There is a nagging doubt about whether Amanda had died so young had she received the appropriate care and treatment. Tommy, her partner, could not have been a more forceful advocate on Amanda’s behalf. For him, he says, the fight is not over.

We’ve only just began – to live.

Coffee Morning

Back in Dublin. Back to the routine – if there was any. Yesterday seems like a dream. Did it really happen?

What will really happen is this coming Sunday’s really important, really generous, really caring fundraiser for Pádraig which Mary and her family have ben organising for years.

Please spread the word and join us if you can!