Lately, I find I’m in a dark place torn between what was and what could be or what might be. I’m finding the present, the now, often too hard to exist in. And I have been contemplating how, if I’m lucky, I might have 20 years of my life left. 30 if I’m really lucky. And in that contemplation, I have been wondering what good, if any, did I actually do the past 18 years while caring 24/7 for my late son Brendan Bjørn? Have all those years advocating even done any good?

On a walk today it dawned on me: I’m having a midlife crisis at a later stage of life, likely put off because my personal life and professional career were put on hold for so many years.

I wish I was at midlife, but as I will turn 58 later this year, I realise all too well that I’m now beyond that mark. Alas, a sense of panic fills me at times as I ponder what I will do next.

My younger son, Declan, will be 15 this month. When he’s 30, I’ll be 72. Yes, that’s another thought which triggers panic within me. Questions which stem from hopes fill my mind: Will he have a career? Will he be married? Will he have kids yet for me to dote on? I know that no one has a crystal ball. I’m just writing what I’m processing in my mind lately.

**Cue the mention of diagnoses of PTSD and anxiety**

I do know one thing:

I am f*cking tired of fighting for proper and timely healthcare in Ireland.

Nearly ten years of that fight now and it has pretty much destroyed me. All those years in constant battle for Brendan Bjørn’s various disability-related services and healthcare needs have taken their toll. Now it’s me and Declan I have to fight for and I just don’t know if I have it in me, to be quite honest. To a great extent, the care and fight around Brendan Bjørn landed me where I am now: disabled with a number of chronic health conditions. To think that now both Declan and I are on waitlists for medical treatment, just like Brendan Bjørn was for so many years, really gives me the chills. How many years will he and I have to wait?

It should not be this way for anyone. Full stop.

I’ve wondered recently if we should have stayed in the US, but as I look at prices there now, it’s even more expensive than here in some aspects. And then there’s the violence and guns…no thanks. Been there and done that, as the saying goes. But still, part of me wonders “what if” we had stayed, would the boys have had a better life and future? Would I have? Some regrets and doubts surface in those questions.

Then there is my beloved Norway. I’ve thought seriously for a number of years about moving to Norway to be near my cousins. I would love nothing more than to have family nearby and know that one day, when it’s time for Declan to be without me, I have left him in an amazing country with a solid standard of living, healthcare, higher education and opportunities, as well as family, of course. Unfortunately, I learned a few months ago that unless I had a full time job and was therefore covered by the state health service, I would have to obtain private health insurance for both Declan and myself…but in Norway private health insurance doesn’t cover pre-existing conditions (If someone reading this happens to know otherwise, please let me know!) so with all of my present health concerns, that simply won’t work, especially considering those very same health concerns preclude me from being able for full time work. A vicious catch-22.

So, that was a very hard blow likely ending my long-held dream.

The first anniversary of Brendan Bjørn’s death is in 13 days from this writing. I know enough to understand major decisions should not be made during times of emotional upheaval. At this point, I’m wondering when – or if – I ever won’t be in such upheaval. Whatever I eventually decide, it has to be what’s best for Declan and, selfishly said, what’s right for me, too, with whatever time I’m blessed to have left.