When you have expectations, you are setting yourself up for disappointment.
Ryan Reynolds

Do you want to hear the good news or the bad news first?

I’ll start with the good news.

A group of Ireland’s leading experts in building design and development have agreed to make a collective philanthropic effort to design and plan Teach An Saol. Absolutely incredible and unbelievable. But the results will speak for themselves. Hopefully sooner rather than later

The bad news are not really bad news, just a confirmation of what we know already and what I have been told, again, last week by several people who are in the know: the HSE is beyond fixing.

When Senator Tom Clonan told fellow panel members on Virgin Media TV last week that when he asked the HSE for an additional three hours of home care for his disabled son, their only reaction was a review of his son’s medical card, nobody even blinked.

When we shared the episode in An Saol, many families immediately recognised what had happened to Tom Cloone and shared their own experiences of what very much looks akin to “the empire strikes back“. Wouldn’t it be better if we supported rather than attacked people who desperately require help and support?

The approach, statements, and apparent lack of basic courtesy, never mind empathy, by the HSE at times really leave me stunned. In my innocence, I am regularly taken off guard, because I still expect something different.

Apparently, the merits of Teach An Saol have to be evaluated over the coming six weeks – again – before a decision on support can be taken.

Yes, that is correct – and it is as funny as the review of Tom Clonan’s kid’s medical card.

What about the recent, extremely thorough and costly HSE report prepared by independent international experts that stated that a service for those with a sABI is necessary, that An Saol delivers it, and that the service should be expanded because it will position Ireland as a leading shining light internationally. A service for which the Minister for Disability emphatically pledged her support?

Why is it that this inexplicable surprise statement affected me so much? Why am I not able to ignore what to me is a senseless and heartless remark?

When we are surrounded by really good friends who are going out of their way to support us?

When it is clear, that neither “World Peace” nor a functional Health Service Executive can ever be achieved – but, very likely, a purpose build campus for those with a severe acquired brain injury can.

Why can I not exclusively and only focus on the good things – rather than getting distracted by the unfixable?

I am 65 today. My birthday wish is to keep my mouth above the water line for another few years, to find enough strength to make Teach An Saol a reality, doing the obvious, creating the conditions for Pádraig and others to live their lives as they deserve to live it. With a little help from my friends.

Doing the job for a dysfunctional health system that is still wondering whether it is or it isn’t its obligation not even to do it but to support it! The whole thing is so absurd and funny that I’ll have, no doubt, a very Happy Birthday!