No man’s knowledge here can go beyond his experience.

John Locke

We got where we are today because of the people who helped us along the way.

Newton wrote to Hooke, “If I have seen further it is by standing on the shoulders of Giants”. An Irish saying goes, “Ar scáth a chéile a mhaireann na daoine“.

Strangers who offered to settle hospital bills when it wasn’t clear whether his insurance would cover Cape Cod Hospital’s invoices. Who built Pádraig’s new room and bathroom. The Occupational Therapist who established communication using the bleeper. Those who fundraised over the years to allow him to have access to specialised therapies and equipment. They are countless: doctors, clinicians, family members, friends and complete strangers who have made and are making it possible for Pádraig to live his life with his severe brain injury. There is a long, long list of people who have helped him and us along the way.

There were also those whose advice would have led to Pádraig loosing out on his life – beginning with the consultant in Cape Cod Hospital suggesting that while Pádraig would have an intolerable life ahead of him, he could improve many others’ lives by donating his organs.

Pádraig was never going to eat or drink. If he did, he would probably going to aspirate, get an infection, and die. He needed medication to prevent seizures. If he didn’t take them, he could sustain further brain damage. He needed laxatives. Otherwise his digestive system wouldn’t work. He shouldn’t be helped to stand regularly. If he did, it could cause him serious harm. A standing frame we bought was not to be used.

The list of prescriptive textbook ‘expert’ and studied knowledge not just shared with us, but intended to be imposed on Pádraig, goes on.

The reason Pádraig is enjoying his food and drinks. The reason he is not on any medication. The reason he doesn’t have osteoporosis even after 10 years in the wheelchair – is not because of ‘expert’ help and advice, but despite of it – because we had enough strength not to follow it, not to give in to it, and instead trust our instinct and experience, and because we were supported by brave health professionals who were ready to follow common sense and the latest research. Even if that was not aligned with current standard practice.

The reason the An Saol Foundation Centre exists is not because the experts had changed their mind. It exists nearly against all the odds and because we found wise men and women who were prepared to take risks. Who were prepared to implement what forward thinkers propose. Who were prepared to let us challenge current practice.

The Journal and The Irish Times last week carried Pádraig’s story, reflecting on the past 10 years. How his life and that of so many other people changed because of the organisation inspired by him.

On Sundays, when we don’t go to the An Saol Centre, Pádraig stands in his standing frame at home – incredibly tall as always. We have created our own exercise programme with ‘boxing’: moving the arms to the right and the left while turning the whole upper body, or the ‘Mexican wave’: lifting both of his arms up above his head as high as possible. Supported by me at his back and a helper for each his left and his right arm. We have our own playlist and often find the perfect songs to match the exercises we all share.

Our experience has been that we are standing on the shoulders of giants.
Ar scáth a chéile a mhaireann na daoine.

Pádraig is one of them.