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.

YESTERDAY:

Yesterday was 10 months since I lost my precious first born son, Brendan Bjørn. It seems like yesterday that he was here next to me, sitting in his wheelchair, smiling and laughing at his younger brother. It seems like yesterday that I woke up to the sound of him over the video monitor vocalising that he was awake and so it was time for me to get up, too. It seems like yesterday that I watched him take his last breath, the pain is still so intense. But it wasn’t yesterday. None of it was. It was 10 months ago or longer and all of those thoughts are now just memories. Some to be cherished. Some to try and forget.

TODAY:

Today has been 33 years since I lost my mother. She was only 60 and I was only just after turning 24. Both of us far too young. She would have loved Brendan Bjørn and I have to believe that she was there to great him when it was his time to leave me. She was a kind, gentle soul. She had the most vivid blue eyes you can imagine. She smoked too much and drank too much and through her struggles, she always, always loved me. That I’ll never forget.

Today I woke early despite it being a Saturday and drove up to Dublin, laid on that hard backboard of the MRI machine and had a scan of my brain done in an attempt to figure out why I’m having a number of health issues. (see my last blog piece) I hope beyond hope that it will help answer what needs to be done to get my health back on track because I’m not ready to lie down and quit. I’ve too much to live for still. I am fighting for tomorrow.

Today my younger son and I spent the hours driving there and back talking about everything and nothing. We’ve discovered this new opportunity for us to connect in the car recently as I have started driving him to and from school every day. Prior to losing Brendan Bjørn, I could never do such a thing with Declan because of the constraints or limitations imposed on my own abilities due to my caring duties. Over the past 10 months, Declan and I have slowly dipped our toes into the future with this new ‘freedom’ which arose from such a devastating loss. I feel a level of guilt saying that, but there it is. Some of you will understand.

TOMORROW:

Tomorrow is Mother’s Day here in Ireland. It’s a day that, in my heart, means the world to me.

I dedicate this post to my own mother, long passed, but who I still dearly miss.

I dedicate this post to my beautiful, perfect angel Brendan Bjørn, who made me a mother after four miscarriages and so many years of thinking I would never see that dream actually come true. What a gift he gave to me. What a gift he was in my life.

And I dedicate this post to my son Declan, for it is he who keeps me going now and he who continues to bring laughter and purpose to my days. An amazing, compassionate, truly special young man who I am so passionately proud to have as my son.

Tomorrow. May all of our tomorrows be better than our yesterdays and may all of our todays be filled with hope for our tomorrows.

Later this week it will be 10 months since I lost my profoundly disabled son Brendan Bjørn. In those 10 months I’ve learned a lot about myself. Or should I say, a lot has revealed itself about me.

Before my son died, and then in the time since, I thought I would leave disability behind me. After all, I had devoted nearly 18 years not only providing around the clock, nursing-level care to my beautiful son as a lone parent carer, but I had also devoted countess hours (indeed, about 16 years) to being an advocate for disability and carer rights, and to CMV Awareness.

But life had other plans.

Now I’m the one classified as disabled.
That is DAMN HARD to admit.

Once upon a time, I was a tomboy playing softball and soccer. Later, I studied the martial art TaeKwonDo for years, obtaining the rank of second degree black belt, and competed in national tournaments. I was a fitness instructor. I was an avid hiker. In other words, I was as fit as they come.

Fast forward to today and I am sitting here typing this while my feet and toes are driving me mad with neuropathy pain, numbness and tingling simultaneously. It’s chronic. It’s around the clock. It’s driving me crazy. The consultants aren’t sure what it is from and the preliminary diagnosis is fibromyalgia. The symptoms first began shortly after my first bout of COVID-19 in April 2020. I’m on medication for the pain now, but because of how the medication effects me, I can only take it at night.

Some days are better than others.

Some days I can walk without any issues. Other days I feel like I’m trying to walk with someone else’s feet. It’s hard to describe, really. I’ve had a CT of my back and hips to see if there’s anything of note there relating to this issue, but it seems not. Just the degenerative discs from years of heavy lifting caring work. I say ‘just‘ as I roll my eyes.

And then there’s the adult onset asthma. As with the fibromyalgia, some days are better than others. Some days I can walk to the shop without a bother. Other days I walk and have to stop halfway there and catch my breath. The shop is only 1/4 mile away.

I think I’ll skip over the high cholesterol (yes, I’m on meds for that now, too) and possible heart issue (yes, I just had a cardiac CT angiogram and am awaiting results). Enough is enough, right?

I had always imagined that I would once again, after losing BB, take back up hiking and being very physically active. To not be able to do so has been torture on top of the heartbreak of losing him.

I’m not sure how else to describe it, but it is hell.

Next weekend I am having an MRI done on my brain. (no jokes, anyone!) I’ve been having some vertigo-like experiences, random dizziness and such. Who knows, maybe they’ll find a reason for the fibromyalgia neuropathy pain? I sure do hope so.

Brendan Bjørn was always so full of joy. He never showed any bother at seeing his able-bodied brother or classmates running around. In fact, he got absolute pleasure out of it! In the early days of his journey, I was worried he felt left out or hurt or upset, but he quickly showed me that he wasn’t. The beaming smiles and the deep laughter at watching others around him play told me that he was happy. Being disabled from birth was all he knew and I suppose that was, to him, his way of perceiving the world around him.

Me, on the other hand, the one who spent 30 plus years of her life as a very active, sporty person, I’m not doing so well with this new reality. I’m actually angry about it. I can’t help but think that if I had received the proper supports to care for Brendan Bjørn over the years and been able to continue a daily life of my career and social activities including fitness and looking after my own health, it would have been different for me today.

I wouldn’t be sitting here in pain.

I wouldn’t have been forced to put off medical appointments for literally years because I couldn’t get the care for Brendan Bjørn.

So much would have been different with the proper supports, and that truly angers me.

Governments should be smart enough to realise that if they fully supported carers with the needs of their disabled loved one, and enabled that carer to continue work and actually take care of themselves, it benefits all concerned. Think continuing to pay into the tax base in continuing a career while also being able to maintain their own health and not ending up disabled themselves…hello!!!

I read a quote once about disability. It said: We are all just one banana peel away from being disabled. It’s not meant to be flippant. It’s actually completely accurate.

One awful car accident.
One time your child falls off of their bike and hits their head.
One birth defect.
One virus.
One disease.
…One banana peel.

I thought I would leave disability behind me. Life had other plans.

The disabled population is the world’s largest minority
of which anyone can become part of at any time.

I was a full time, lone parent, nursing level carer to my profoundly disabled son, Brendan Bjørn, for nearly 18 years. He passed away 9 months ago, age 17 years and 7 1/2 months. These past 9 months have been a period of collapse for me. Physically, emotionally, and even financially. I saw this diagram on the Freudenberger stages of burnout today while scrolling through Twitter. It’s prompted me to write this blog piece.

My caring role ended 9 months ago, but I am in stage 12 of burnout.

You may ask, how can that be? In fact, I have asked myself that very question this morning.
The following is how it can be…and how it is.

For many years I’ve written about burnout. I asked for more supports. I begged for more respite. I worked advocating for better services. Nearly all of that effort was for naught.

During those years, I highlighted how carer burnout is a very real – and very dangerous – state of being. I pointed out that if a carer is unable to attend to their own needs, they will eventually collapse. In one way, or in all ways, they will collapse.

And so I have done.

It is with the clarity of hindsight that I can now see just how shockingly accurate my previous descriptions of ‘running on fumes’ truly was. It is also with the clarity of hindsight, coupled with the current level of struggles I face, that I can see how spot on my advocacy imploring the government and disability sector for reform was.

Financially: When a long term, full time family carer loses their loved one, they are thrown off of a financial cliff edge. Years and years of the financial supports (social welfare) for the disabled family member and for themselves as a carer come to a stop in the blink of an eye at the death of that beloved person. Keep in mind, some carers have been decades out of the paid work market, now unmarketable in an extremely competitive workforce. And are they even able to work at this point in their life? That leads me to the next section.

Physically: When the caring role ends at the death of the loved one, those all important fumes which sustained the carer no longer exist. There is no more fuel in the reserves of the carer. This is usually when any long-ignored health issues come racing into the life of the now former carer. And how are these pressing medical issues to be resolved quickly when the health system is in crisis and waitlists for consultants are literally years long? Or, if private insurance is an option, how is the now financially broken former carer to pay for everything the private insurance doesn’t cover?

And in a sick twist of irony, how can they work when they are now disabled themselves after years of unwillingly sacrificing their own well-being and health without the proper supports?

Emotionally: Where do I even start? Grief. All consuming grief which only exacerbates the physical medical issues that the former carer now has time to try and resolve. That realisation is a reminder of the great loss which has now provided this bitter freedom to care for one’s self. More grief insues. Wavering between being desperately anxious to become healthy and not being able to pay for the medical costs. Knowing that life can’t continue on in the poor health now so glaringly obvious to the former carer yet feeling the stress of the financial constraints to seek medical care. More stress insues.

It is a vicious cycle in which these three areas spin relentlessly in the life of the now former carer.

To be sure, not every former carer experiences these concerns. Aging, lone-parent, long term, full time carers with little to no family supports are likely the most vulnerable of the carer cohort. It happens to be the cohort I am in, so it is what I write about today.

I have to now wonder what life would be like for me today, 9 months on after losing my precious son, had I not been so devastatingly burned out over the last few years of my caring life. What if the government and related disability sector bodies had provided proper services and supports?

My health concerns could have been seen to far earlier. I could have even continued my career and had an income stream as well as a retirement to look forward to. I could have maintained a social life rather than having been a virtual shut-in these past number of years.

Everything would have been different, not just then, but NOW.
And not just for me, but for my other son.

Today, 8 months and some number of days after losing my beautiful son Brendan Bjørn, I sold the wheelchair accessible van which carried him to and fro while he happily looked out the windows, a big smile usually on his face. For 5 years, the Brendan-mobile did its job well, dutifully, and was an extension of his all-too-limited freedom. Those four wheels provided him a life outside of the four walls of his bedroom. That is priceless.

Today, there is now just an empty space in the driveway and it adds to the empty feeling in my heart.

I lay in bed last night thinking about loss, about letting go, and about empty spaces. I thought about death. I thought about my own death and wondered, who really would miss me other than my younger son? It’s a genuine question and I think the answer is that no one, apart from my son, would truly ache at my passing and have their life be painfully impacted, as mine and Declan’s have been with the passing of Brendan Bjørn. Have you ever wondered the same?

That honest realisation seems to widen the void that is an empty space in my psyche.

I’ve always tended to look inward. It can be a dangerous direction to explore, but it can also be a revealing journey. Ever since the early days of working on my first University degree, I enjoyed Jungian studies. This journey into the dark space which is the empty space is daunting, though, maybe because that particular dark space actually isn’t empty. It’s filled with pain, guilt, loss, unmet dreams, and more…all of the things which keep one hurting. I tend to keep myself from looking in that direction too often because dealing with the grief at losing my first born son is enough to try to handle. But some moments, like last night while I lie there in my bed alone in the dark, those thoughts just come.

There is still one space which isn’t empty: Brendan Bjørn’s bedroom.

I managed to do a tiny bit of work in clearing out his bedroom last week. One day. The days after that I couldn’t bring myself to do further work on it. I suppose that’s how I know I’m not yet ready for his bedroom to be a space empty of the necessary items for his daily care and life. I’m not ready for it to be a space empty of him.

Not yet.
In time.

I have enough to contend with at the moment with the empty space in my heart.

Carers have battled for too many years for their unique rights to be addressed to have them now conflated with gender equality, equal pay, who does what level of housework in the home, or who picks up the kids from school more often, as the current IHREC campaign is doing (see recent articles and interviews). It only serves to diminish the voice of family carers, as I describe below.

As stated on the Irish Human Rights and Equality Commission (IHREC) website, “The #CareAboutEquality national campaign aims to inform public attitudes on the value of care, the gendered nature of caring, both unpaid and low-paid, and how this impacts on women’s lives in Ireland.”

This campaign stems from the 2019 The Citizens Assembly on Gender Equality https://www.citizensassembly.ie/en/previous-assemblies/2020-2021-citizens-assembly-on-gender-equality/about-the-citizens-assembly/

IHREC is a 15 member Commission appointed by President Michael D. Higgins, in 2014. They are “an independent public body that accounts to the Oireachtas, with a mandate established under the Irish Human Rights and Equality Commission Act 2014 (IHREC Act 2014).” As stated on their website, this current campaign, Care About Equality was based on input from their consultative group members, 9 women and 1 man.

Since the 2019 assembly, I have spoken out against the use of the terms “carer” and “care work” to describe parenting. I have advocated they use “Mother/Father/Parent” and “parenting” or “housework” respectively, but to no avail. On January 6th, the #CareAboutEquality campaign was launched by IHREC, still using the term “care work” to describe parenting and related work such as housework. This terminology diminishes the issues that so many of us have fought for as family carers of a disabled and/or incapacitated family member.

My primary contention with their campaign is the false equivalency between caring and parenting. Being a family carer of a disabled and/or incapacitated loved one is NOT the same thing as being a parent or parenting.

To help explain my position, I’ll describe my personal experience on it:

I was a carer (an unpaid carer) to my profoundly disabled son for nearly 18 years. He passed away 7 months ago, 5 months short of his 18th birthday. The care work I performed was nursing level care, 24/7. That care work was intensive, medically-based and required training, skill and continual learning. It also required I give up my own career. I am a lone parent. I was a lone parent carer. I was also his mother, but again, to be very clear, the work I did for nearly 18 years to keep my son alive was not remotely similar to that of being solely his mother.

I also have another son. I am his mother, his parent, his only parent, but I am not his carer. What I do is mothering or parenting or it is housework, but is not “care work”. Do I ‘care’? Of course I care! But the use of the term “care work” is not, nor should it be, used to describe the typical parenting work I do for my son or in the home.

Are those other issues addressed in the IHREC #CareAboutEquality campaign important? Absolutely! Those aren’t my grievances.

My grievance is that by using the terms “carer” and “care work” to describe typical parenting and household duties, it serves to diminish the voice and advocacy efforts of family carers. Conflating actual caring work with gender pay issues or parenting duties or the division of household work, as I believe this campaign does, muddies the waters for a carer’s unique role.

As an aside, I believe that such an important campaign would benefit from wide-reaching consultation, not just from 10 people. If advocacy bodies don’t seek input from a much larger consultation grouping, it will likely result in a problematic campaign, as I see this one to be. And, if a commission as powerful as IHREC, who again accounts directly to the Oireachtas, is to be given such media coverage and governmental policy impact, I would suggest said commission to not be comprised of 15 hand-picked members.

2022 was the worst year of my life. There really is no other way to put it. If a person can hate a year, then I will say I hate 2022. I know, I know, hating a year doesn’t get me anywhere. However, releasing that indescribable pain and anger, even somewhat, helps me to heal so I can take a few more steps forward into 2023.

2022

• At the beginning of the year, I was diagnosed with adult-onset asthma, high cholesterol and fibromyalgia with chronic neuropathic pain. I’m now on medication for each of those conditions. Did I mention I’m also on a CPAP at night for sleep apnea? (a deep sigh and an eye roll being done here)

• In May, as those of you who follow this blog know, I lost my beloved, precious, first born son, Brendan Bjørn. There is no greater loss than that of a child. Half of my heart will forever be missing.

• In July, I got covid, probably for the second time. Long covid has now been discussed.

• And currently, I embarrassingly weigh more than I’ve ever been before and I’m disgusted with that weight. My other health conditions don’t help with my weight, and my weight doesn’t help those conditions. It is a truly vicious circle.

So here we are today. There is one day left in 2022 and I, for one, will not be sad to see the door close on this year. I must now look ahead to 2023. Things have to change and indeed, improve. My health is a primary focus. Declan’s future is another.

This all leaves me with much to ponder as the New Year quickly approaches.

2023

In my head, I wrestle with the realistic understanding that life is short and this is our one and only shot at it. As the saying goes, life is not a dress rehearsal. So I wonder: Where do my dreams fit in with the remaining time I have? What dreams do I, or must I, sacrifice and which ones can I actually see to fruition? I’ve lived enough of life to know that I cannot have it all, as some unrealistic folks might like to suggest.

I’m entering 2023 with far more questions than answers.
I won’t be setting any New Year’s resolutions.

I’m just going to try my best to put one foot in front of the other (figuratively and literally) while I learn how to navigate and live life without Brendan Bjørn and with these new health concerns of my own. I will hold my younger son’s hand (again, figuratively and literally) as we step into this new year, this new life, for us both.

I will do it all with such deep gratitude and love for my son Declan and with the blessed memories and unending love that I have for my angel Brendan Bjørn.

When you think about it, 18 years is a long time to spend with someone. In this case, I’m talking about my first born son, Brendan Bjørn. I spent 18 Christmases with him.

This is the first one without him since 2003.

Our first Christmas together was in 2004. He was not quite 3 months old. It was the beginning of our journey. The diagnosis of congenital CMV (cytomegalovirus) and the resulting severe brain damage in utero was already given by this first Christmas together, but it was to become a journey which no one could foretell.

That first Christmas together was also my first Christmas as a mother. I always wanted to be a mom, and it was this amazing little baby I held in my arms who gave me that gift. Despite my heartbreak and the uncertain future ahead, or maybe because of the uncertainty of it all, I wanted that first Christmas to be perfect. I ordered a handmade stocking for him. I smile now as I remember that the stocking was twice the size of baby Brendan Bjørn. That same stocking is hanging from the fireplace directly in front of me as I type this blog piece. Of course now there is also the stocking for Declan which was added Christmas of 2008.

Declan. This is his first Christmas ever without his big brother. He had 14 Christmases with Brendan Bjørn. In my own grief, I cannot forget that fact. And I don’t forget that fact. We talk about him a lot. We miss him desperately, together. And tomorrow, on Christmas day, we will light a candle here at our house and speak to him from our hearts.

And he will hear us.
Of that I have no doubt.

As I think about our last Christmas together, 2021, I couldn’t have known that it was the last. Having said that, over the last number of years, it was never far from my mind that every special holiday could in fact be the last. This journey with a child who had a life-limiting condition was always one of uncertainty. Some days, some months, even some years, that uncertainty wasn’t thought of so much. But those latter years…God, those latter years…it was nearly an hourly reality which weighed heavy on the mind and heart.

I think this is, in part, why my soul is so tired now.

Those latter years of wondering every morning when I woke up, would I find him gone. Wondering would he have a seizure and die while at school and I wouldn’t be able to get to him in time to hold him in my arms while he left us. Would he linger on in pain or discomfort for months on end, or would he go quickly and quietly in his sleep.

If you haven’t been on this road, I cannot adequately explain to you just how taxing it is.

In the end, my beautiful boy’s departure from us was the one I had always dreaded: the one where his gastrointestinal system would no longer tolerate or absorb the special PEG feedings. I had seen it before in other children with cCMV and it was the one I feared the most. It was horrific to watch unfold over those last few months. Horrific. If I could forget anything, it’s the visualisation that keeps running through my mind of those last minutes.

Sorry, I know it’s Christmastime and this is not a very happy blog piece, but alas, it is what’s on my heart.

Brendan Bjørn loved Christmas. The music. The lights and sparkly garland. I always made sure to decorate his room, too. I can hear his laughter of joy. I can see his eyes beaming with love and light and that smile which lit up a room. Yes, these are the memories I want to keep playing over in my mind. I pray that those will be the memories I never forget.

When you think about it, 18 years is a long time to spend with someone.
I just wish I had another 18 years to spend with my beautiful son, Brendan Bjørn.