Ireland is under a Status Red weather warning for a blizzard that is bearing down on our lovely little island. People are buying bread in droves, which I find funny having been through many blizzards while living elsewhere. But there is something about all this that I don’t find funny. A boy and a bed. More specifically, my boy and his bed.

Brendan Bjorn is bedridden (as most of you know) with a pressure sore just below his left buttocks which prohibits him from sitting in his wheelchair. Today is day 128 of him being bedridden. Yeah, 128 very long days. Anyway, his bed is electric and articulates to keep him safe from aspiration, keep his body – challenged by scoliosis, osteoporosis, hip dysplasia and severe cerebral palsy – safe, comfortable and in proper position. The mattress he lays upon is also run by an electric motor. It is a specialised air mattress designed for pressure sore relief. He is also fed over a 24 hour period via a feeding pump. You guessed it, that pump requires electricity to keep it charged.

What happens if we lose electricity in the blizzard?

We are on the priority list with ESB (for those of you not in Ireland, that is the national electricity supplier). However, being on that list will not keep Brendan’s bed and mattress from working if the power goes out. There is no backup power supply. There is no generator to be given.

What would happen if his mattress begins to deflate?

There is no good option, and the only option would be me carrying him to the sofa. That is a dangerous option when it comes to his well-being. It’s a no option, option, as such.

What do I think needs to be done?

For families like mine who have a medically fragile loved one being cared for at home – especially with such profound care needs – I think there must be implementation of an organised, clear protocol to assure best care will be able to continue. For example: Brendan has a disability team locally on which is a social worker. I suggest that the social worker make contact with each family in this situation prior to a major weather event to address what needs they may have if power goes out. If not the social worker, how about the life-limiting illness outreach nurses that children like Brendan are assigned to and who are supposed to be monitoring their overall care?

There needs to be a backup plan for families like mine, but instead, we are left without contact. No plan. No check-in to see if all is ok. Nothing but silence. Where is the Minister for Disability or the Minister for Health or the Minister for Children? Silent…

But I am not silent. So, I add this issue to my ever-growing list of reforms that must be made for families with disabled children who have profound care needs. It is past time for proper, gold standard, wrap-around care services to be implemented in Ireland.

Today across Ireland, thousands of family carers are tucked away in their homes, quietly struggling to do all they can to keep their loved one alive praying the electricity doesn’t go out, while outside a blizzard begins to rage. It’s not about bread. We can all live without bread. What we carers need is proper wrap-around supports, and we need them now.