The secret of change is to focus all your energy, not on fighting the old but on building the new.
Dan Millman

Someone attached to a rubber band jumping off a platform high up in the sky is either stone mad or has a lot of faith.

Whatever the case may be, nobody will stop them from jumping.

Once there was a care provider manager pushing Pádraig’s wheelchair along the footpath in front of our house to assess the risks – not for Pádraig, but for his carers. We breathed a big sigh of relief when she approved the risk. She could have stopped Pádraig from going out with his carers had she deemed the risks to be too high.

When you have a disability, everything seems to become a risk. Even going out to get a breath of fresh air. I had to think of the hospital consultant who would not allow Pádraig go out because “We don’t want any dead people in our yard.”

Is this a case of the German Psychiatrist Consultant Manfred Lütz‘s thesis that We’re treating the wrong people: Our problem are the normal (Wir behandeln die Falschen: Unser Problem sind die Normalen)?

Speaking of ‘treatments’.

Over Christmas, I had a long phone call and various email exchanges with a U.K.-based highly experienced therapist who invented Facial Oral Tract Therapy (F.O.T.T.) and many other approaches to dealing with the effects of acquired brain injuries. When I mentioned to her that we wanted to work on Pádraig’s voice production, she asked me a dozen questions which I was not able to answer, except one.

No, we had not tried to encourage Pádraig to produce voice when he was lying on his stomach. But why not, she asked?. Lying on your tommy is the easiest position to produce sound, she said.

In ten years since Pádraig’s accident, no-one ever had told us.

We tried it out. It worked wonders.

Similar to his Ptosis. Very well known and understood condition following brain injury, she said. Really, I asked? Just one German neurologist had ever mentioned that to us in the past years.

She sent me a few papers and links. Here is a selection of what she shared with me.

There is so much knowledge, expertise and advise available that would make so many people’s live so much easier.

We just have to make it available in Ireland. Focus all our energy on building the new.

We went into town with Pádraig over Christmas and had a great time. Among many other really funny and entertaining things we came across was this man in a balaclava standing in front of a Garda car on Henry Street advertising a traditional Sunday beef roast and the best pint in Dublin.

He was definitely taking a risk. So were the Gardai.

I was wondering whether this was real or whether my mind was playing games.

Standing in the way of a Garda car in a balaclava advertising pints of Guinness on one of the busiest pedestrian streets of our capital city?

Stone mad. Definitely. And so very real.

Today is the ninth anniversary of the day that a young courageous doctor pulled out Pádraig’s tracheostomy, put a plaster on the opening, wondering why nobody had tried this before — and then organised a room for Pádraig in her hospital rather than sending us back to where we had come from, apologising that it was only a single room. But, she said, she had organised a mattress for me to sleep on the floor and a reclining chair for his mother so that we could both stay with him, if that was ok. Meals, she said, again apologising, unfortunately could only be served for Pádraig and one other person. Over the next two weeks, I organised the move from a small apartment to a bigger top floor apartment in a brand new coop building. Luckily, one of Pádraig’s friends was over to visit. He helped me to move all of our belongings loading a rented truck up to the roof. Two weeks later, after 19 months, Pádraig was discharged from hospital. Against the repeated, strongest advice and the extremely negative and frightening prognosis by his doctors in the hospital he had spent nearly 19 months in, he never aspirated, never had a lung infection or pneumonia, and he not only survived, but is enjoying with us and his friends the same food and the same drinks – which he immensely enjoys.

Stone mad. Definitely. And so very real.