Loads of conversations with other families and people looking after survivors of sABI. The amount of things you can learn from others who are in the same situation as ourselves is incredible. Of course, every family, every survivor, they are all different and they all deal in different ways with the situation, but there is still a huge common ground.

At the same time, my head is spinning. We are doing so much work here with Pádraig and we know, it’s still not enough and we could do so much more. There are so many aspects to what he needs and is longing for, from challenging therapy sessions, to days out with friends and good company.

i am trying to book flights back to Ireland to meet with the Minister of Health and Fianna Fail’s spokesperson for health so that we get their commitment to support An Saol’s pilot project. In parallel, we are trying to get the 1,000 km fundraising bike tour on the road. While all the time dealing with everyday stuff that would need a personal secretary to do all this properly.

Inside, I’m crying and in despair much more often then I would like to. There are doubts and feelings of inadequateness, loneliness, utter helplessness and raw outrage all mixed up with mental and physical exhaustion.

I guess the trick is to keep going’ –  no matter what. If it was easy, it would all have been done before! And we know that we’ll get there!