One year ago today (late February 2024), I sold “Brendan’s Bungalow” to the HSE Disability Services for the Southeast Region. I never thought I would move from that house – and in hindsight it is a tremendous regret that I’m struggling to deal with now – but I was having an emotionally difficult time in my grief walking by the room, multiple times a day, where my beloved son passed on in May 2022. As I said, I now desperately regret it.

The agreement was that the 4/5 bedroom, disability modified bungalow on half an acre would become a respite centre for disabled children like my late son, Brendan Bjørn. There is no other respite centre in County Wexford that can accommodate a profoundly disabled child who requires an overhead hoist. In my late son’s bedroom, there is just such an overhead hoist system, new and top of the line.

This home was to become a place where other disabled children, like my son was, could find comfort and laugh and fill the house with that special love once again, just as he did. This home was to become his last legacy.

A year on, the house continues to sit empty.

I drove by the house a few days ago. To see our former home in the hollow, disrespected, empty condition it is now literally makes me physically sick. I feel as if all of our memories, all of the respect due to my son…just EVERYTHING…is being trampled on with callous disregard. It feels like losing him all over again, and I can’t bear that feeling.

I have tried to uncover exactly why our former home still sits empty and I receive repeated replies about planning permission, budgets for ‘required’ work and HIQA requirements. Frankly, I hear bullsh*t because I know that where there is will (ie: political will), there is a way. I see so much spin from the Government about how they care about Disability Services. Article after article about needless expenditures from the Government from bike sheds to walls to unused art scanners, all tremendously overpriced and unnecessary. What IS necessary is respite for families with disabled children.

There are only two other respite centres which were offered at one point to my son when he was still alive, and neither of them could accommodate his needs. They were old, narrow hallways and doorways, tiny bedrooms where his wheelchair wouldn’t even fit, and no overhead hoist to get him in and out of a specialised bed (which they also don’t have). How they pass regulations I have no idea when I consider what I’m being told now about why our former home isn’t yet being used as a respite centre.

There is absolutely NO reason our former home can’t be used currently in the agreed upon way: As a respite centre for physically disabled children, even if it’s a day respite centre to begin with. I discussed this with the then-manager of the HSE Disability services and she fully agreed.
A year on, there is a new manager and they are telling me the home may likely be used for kids without physical disabilities. I may sound harsh here, but it’s children with severe/profound physical disabilities who have no options at all for respite in the region. It is for those children – like my late son – the home was intended for, agreed to be for, when I sold it.

I feel betrayed by the HSE Disability Services. I am hurt and angry. I am disappointed and heartbroken. I feel appalled.

And to be clear, toward myself I feel much of those same emotions, topped with regret, for having sold our home to the HSE in the first place. 2024 was probably the most emotionally challenging year of my life as I look back on it now. I thought I was doing something beneficial. Something good in Brendan’s name. Instead, 2024 turned out to be rife with bad decisions, lost dreams, failure, ill health, and the tailspin which comes with the grief of losing a child you fought for nearly 18 years to keep alive, but in the end, couldn’t.

If only I could turn back the clock. If only.

It still sits empty.