one year


My dearest son Brendan Bjørn, how has it been a year since I saw you leave me? Time has been at a standstill since you took your last breath. I have been frozen, lost in the emotional chaos of grief. One year. How can it be?

I still hope it’s just a nightmare from which I will wake relieved though traumatised. But I know it isn’t just a nightmare.

I know this is life’s cruel reality one year on.

I went into your bedroom yesterday, memories hidden behind the closed door. There were cobwebs in the corner. Dust on the dresser. I felt shame and guilt that I’ve let it go like this for so long. If you saw, you’ll know that I’ve cleaned it now, although there is still much more to do.

I think it’s time for me to begin the thaw; to begin sorting through your things to pass them on to others in need. I plan to bring your talking Mother Goose to your school. I imagine your former fellow students will enjoy it as much as you did. I’ll bring other toys of yours to share, too. I hope that makes you happy, my beautiful angel.

Your oxygen tanks are still here, never having been collected. I must call about those again. There is so much I need to get sorted, so much I need to decide, so much to do. But not today. No, not today.

Today I will try to forget you in those last horrifying moments which continue to terrorise my mind.

Today I will try to remember only your laughter and the beaming smile that accompanied it for nearly 18 years.

Today I will try to feel again that sense of wholeness when I first held you in my arms all those years ago as you scowled at the bright operating room lights and I told you not to worry because I had you…I had you.

Today I will try to think on only the good moments – which were immeasurable – filled with such a magical unconditional love and pureness of soul.

I hope you know that you meant everything to me and how blessed and thankful I am to have been your mother.

I hope I never failed you.

I hope you only ever felt completely and beautifully loved, for you were the very best of this world.

Your brother misses you, too, but I have no doubts you know that, for the special bond the two of you shared was a sight to behold. How privileged I was to witness that love! I hope you’re smiling when we talk of you and that it brings you joy to watch over us as we cherish our memories of you. I have to think that you are.

I have to believe.

Today I will try to be a little better than I was the day before. I will try the same again tomorrow and then the day after. I will keep trying, for you, my beloved Brendan Bjørn, and for your amazing younger brother.

Today I will try, but I know I will fail for the most part because I am so utterly broken…still…one year on. I am numb yet I am in agony. I am lost yet I am all too aware of where I am at as I sit here typing this and realise a year ago this time you had less than an hour to live. 7:44am draws near.

You see how I’ve already failed at forgetting those last horrifying moments?

I must try to give myself the grace to just be in the day that it is because I know that is what you would want for me.

These words are so vastly insufficient, but I miss you, angel boy. Every moment of every day with every fiber of my being, I miss you. Thank you for all that you gave to me and all that you taught me. Thank you for being my son. I was truly, truly blessed to be your mother.

I love you, baby, forever and ever and ever,


A midlife crisis at a later stage of life


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.


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