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.

I turn 57 today. It has been the most difficult year of my life thus far. In 4 days, it will be 7 months since I lost by first born son, my beautiful Brendan Bjørn. In 12 days it will be my first Christmas without him since 2004.

Yes, it has been, and continues to be, one hell of a difficult year.

December 13th is St. Lucia Day in Scandinavia, celebrating St. Lucy. The ceremony begins with a girl dressed in a white gown with a wreath of candles on her head to symbolise bringing light into a time of darkness. In more ancient Norse times, it was a celebration of the winter solstice complete with big bonfires to bring the light and scare off evil spirits. As with many beliefs over the passing of time, the old ideas merged with the new, and here we are celebrating the bringing of light into dark times on my birthday. I’ve always found that pretty special.

So, for the day that it is, in all of the above ways, I am trying to shine some light on the darkness in my life.

The darkness: I’m 57, I have a number of health issues which keep me from being as physically-able as I have normally been and desperately want to be once more. I just hope I can be. I am trying to manage those conditions as best I can, with medications, but they still leave me not all I want to be. Or should I say, not all that I NEED to be.

Caring for my son for so many years without the proper supports has taken its toll on my body and my health. Let’s make no mistake about that fact.

I need to reinvent myself now that the caring job is over.

I’m barely scraping by financially. I need to earn an income again, so many years after leaving my professional career to become a full time carer to Brendan Bjørn. How do I do that when I’ve been ‘unemployed’ for so long? When I have such health issues? When I’m so tired and who I am has changed so much? When I’m 57 and looking to compete in a market with much younger, up to date and relevant candidates? When I’m still so lost as what to do and where to do it?

How do I reinvent myself now?

This reinventing myself isn’t just about me, contrary to how it sounds. If it was just about me, I’d likely ride off into the sunset and live a quiet, albeit poor, life somewhere remote until my days were done. I’d happily live in a log cabin in the mountains and watch nature go by, sunrise to sunset, while I write my memoirs and other musings. And part of me does want that for myself – to be surrounded by peaceful, beautiful nature with mountains, forests and lakes which bring peace to my soul.

But no, this is, to the greatest extent, about my younger son, Declan. He needs me to be all I can be for him now. I need to provide the life, the home, the stable foundation that he so rightly deserves. This is where reinventing myself comes into play. This next chapter…or new book altogether…is for him. And so, I hope my health can be what it needs to be in order for me to reinvent myself. I’m scared it won’t or can’t be. It must be, though, I keep telling myself. It simply must be.

I just wish St. Lucia would shine the light a bit brighter so I could see what to do.

It’s been 6 months since my eldest son, Brendan Bjorn, died. When I say it’s been half a year, it sounds so much longer than it feels, so 6 months somehow seems more accurate though they are the same amount of time. It may not make sense to many of you, but not much about grief does make sense.

It just is, and it is different for everyone.

Next month will be the first Christmas without him. It will just be me and Declan sitting around the tree. I’ve put the tree up already but can’t bring myself to put the lights and decorations on it yet. If Brendan Bjorn was still here, it would all be done by now because a lit Christmas tree was one of his favourite things in the world. Declan has been asking when we’ll finish it. I think today will be the day: 6 months since we lost him. It sounds like a good day to put on the lights he loved so much.

His room goes untouched still, but I know I need to start clearing it out soon. I need to start trying to look ahead to a future without him as the centre his brother and I revolved around. I need to make some decisions for Declan and I now: what is best for us, where is best for us, and how and when do I make that happen for us.

People constantly tell me ‘it’s early days’ yet with each passing day, that unknown future which requires decisions to be made draws nearer.

I feel at a loss for words this morning. Some days are just like that, sitting in the numbness and confusion of grief. Today is one of those days. Maybe tomorrow I’ll find more humour. Maybe even later today. The description of grief as coming in waves is spot on. 6 months on, the waves are steadily becoming more manageable. Is it because I’m so exhausted from the grief journey, and indeed the nearly 18 years of being a carer, that I’m feeling so indescribably exhausted and numb? I think in part, yes.

Every morning I put my hand on his urn and say good morning.

Every night I put my hand on his urn and say good night.

Every day I miss him and want him back.

6 months ago today I watched my first born son gasp for his last breaths as I held his hand.

6 months ago today I screamed in agony as he had no more breaths.

6 months ago today…

It’s 5 months today since I lost my first born son, Brendan Bjorn, on 17 May 2022. I don’t know where the time has gone. It was just yesterday, or so it feels with such raw pain. It was ages ago, or so it feels with the surreal nature of grief.

I was blessed to have him in my life for 17 years, 7 months and 17 days.
That is time I wouldn’t trade for the world.

Five months on, I am beginning to peak around the corner into the future. To be brutally honest, I worry about how much time I myself have left now. I am determined, for the sake of my youngest son, to make sure I have as much time as possible on this earth with him. I am all he has left.

You see, my health has been growing worse. It’s time for me to focus on…well…me. It’s time I put the oxygen mask on myself before putting it on my child, as the analogy goes. I am on 2 waitlists to see specialist consultants: neurology and cardiology. Even though I have private health coverage and a medical card, my GP tells me the neurology consult will be a long time in coming.

As symptoms grow worse, I feel, I fear, I don’t have the time to wait years.
No one should have to wait years for a diagnosis and hopeful treatment for any issue.

In the time being, the GP, my rheumatologist and my respiratory consultant will have to do what they can even though it may be outside of their expertise. I hope that gives me more time while I wait. The symptoms I have and the pain I’m in don’t make this present time, or the wait, very easy.

It’s time now to not only get my own health sorted out, but to get my affairs in order just in case time isn’t on my side. I’m not being dramatic. I’m being logical and trying to look out for my younger son. Five months on from him losing his only sibling, his beloved brother, it’s time my life is all about him, and in that, it means doing all I can to assure that I’m here as long as possible for him. Or, God forbid, if I’m not here, that he will be well loved, well cared for and thrive in his life. It’s time for a lot of decisions to be made.

It’s time now.

Time.
It can be cruel, healing, elusive, slow to pass or go at lighting speed.
It is something we all wish we had more of and thus should cherish what we do have.

Five months on today, my angel boy Brendan Bjorn. If only I had more time with you.
Watch over me and your brother please, keep us healthy and safe
and guide us to fill our time as best we can do.

You would have been 18 years old today, but four and a half months shy of turning 18, we lost you. Four and a half months ago our worlds came crashing down in clearly different ways.

I ache for you every single day since.
How do I do this, Brendan Bjørn?
How do I get through this pain and carry on?

I don’t know how I will handle today. And then there’s that first Christmas without you that is also fast approaching. You so dearly loved the lights on the Christmas tree. So much so, that I would always put up the tree in November just for you to happily gaze upon. Do you remember that where you are now? I hope you do.

Your brother misses you. I can’t help but believe you know this as you watch over him now. How you always loved to watch him! The smile that would beam across your face as your love for him radiated out from you. Yes, he misses you immensely, too.

I wish I could hear you guide me forward, telling me what I should do next. For nearly 18 years, it was you who guided me…your needs were the centre of our world. You were my compass and now I’m lost without your direction, your purpose in my life.

Your bedroom remains the same: half empty without your bed and your wheelchair, yet still all of your other belongs are there, frozen in time, unmoved, untouched. But I suppose you see that now, too, don’t you?

I wish I could see you again. Feel your oh-so-soft cheeks as I caress your face with my hands. Feel you breathing in and out as I lay my head gently on your chest to listen to your heartbeat; a sound that I knew, as the days drew near to an end, I wouldn’t get to ever hear again.

I wish I could find peace in your passing, but I don’t. There is no peace for me, but I hope and pray that there is for you. I still wrestle with self-doubt as to if I did all I could, the best I could, when I could.

Did I?
I wish you could tell me now.

My beloved first born son, I will never forget the first time I saw your chubby little face, scowling at the bright lights of the operating room just after you arrived via cesarean section. My first time to give you what would end up being countless kisses. Ten lifetime’s worth of kisses given over 17 and a half years knowing that you’d not get all the time in this life that you so truly deserved.

To kiss you one more time and have you giggle as you would do.
If only I could…If only you could.

It’s your 18th birthday and I don’t know how to get through this first birthday without you. No balloons. No birthday cake or candles or Happy Birthday song to be sung. Only silence and a desperate longing to have more time with you, my beautiful, precious boy. I know it’s an impossible wish, but I wish it all the same. It’s your birthday yet here I am selfishly being the one wanting that birthday wish to come true. I know you’d understand. And I hope where you are, you aren’t longing for my kisses and snuggles like I am for yours. I hope you’re not wanting for anything. I hope you’re in a beautiful place of bliss that I can’t even begin to imagine. That is my birthday wish for you.

Declan and I have talked about your special day and we will do something to honour you today. I would say to remember you, but my love, we will never, ever, forget you. Know that, please.

I hope the angels are surrounding you with the most glorious of light and love and music of the ages, especially today on this very special day.

And I hope you’ll let me know, somehow, that they are and that you’re with me and Declan still. I won’t ever stop listening for you, angel boy.

Happy birthday, Brendan Bjørn.
I will love you forever and ever and a day,
your Mommy

Today is four months since my son, Brendan Bjørn, took his last breath with his brother and me by his side. Four months today since everything I had centred my life around for nearly 18 years left me in a tailspin filled with grief, pain, and uncertainty.

I have gone into Brendan Bjørn’s room only a handful of times in the past 4 months, although I walk by it daily. I’ll glance in as I walk by. The bed gone. The wheelchair gone. The dresser still there with his television on top just begging to play Finding Nemo one more time. Instead, there is only silence coming from his room.

No more laughter.
No more whirling drone of the feeding pump.
No more beeps from the various alarms.

There is only silence surrounding everything that was left as it was that day 4 months ago.

His clothes remain stacked up on a table. They are all dusty now. They’ll clearly need a wash before I donate them. I can’t do that yet.

His bedside locker still there, covered in the daily medical care items which are now destined for the bin, yet I can’t bring myself to complete that task, either.

Instead, I hold on to this unrealistic status quo as if I can make time stand still. But of course, I can’t. Time keeps moving along whether I move with it or not. I suppose that’s why I don’t go into his room and only give a quick glance as I pass it: If I stay or look too long at it, the emptiness will engulf me, reminding me that he is gone; reminding me that what I built my life around for nearly two decades no longer exists.

Parents like me who are (or have been, in my case) long term carers to their disabled child not only are left to grieve when their precious child (or adult child) dies, but they are left without a career to return to after so many years working full-time, around the clock, (unpaid, mind you) at keeping their child alive. They are often suddenly left with no income stream at all. They are suddenly reminded that they are aging and have health issues from the toll caring work took on their own bodies. They are also suddenly cognisant of the fact that there was no pension accruing for that elusive thing called retirement.

All of these lead to feelings of desperate fear and uncertainty about the future, while trying to simultaneously navigate the road of grief. There are no street signs telling you which way to go or what speed to even attempt.

It’s like an unlit tunnel in which you hope you’ll soon see a light to guide you forward.

Yesterday, I got a memorial tattoo done in his honour. I think he would have loved looking at it. He so enjoyed seeing everything in his surroundings! I can imagine his big, happy smile. I’m looking down at the tattoo now as I type. People have long said I wear my heart on my sleeve, and so now, I truly do. I always will. For you, my beautiful angel Brendan Bjørn. As always, for you.

Three months ago, I lost my first born son, Brendan Bjørn. He was 17 years, 7 months, and 17 days old. He was profoundly disabled and medically fragile. On that day, 17 May 2022, my world fell apart. I had hoped by now I would have more clarity on the direction of the journey ahead, but I don’t.

I am still bewildered.
Lost.
Confused.
Unsure of what to do next.

I have another boy who holds the other half of my heart, my youngest son, Declan. I think he’s bewildered, too, although he doesn’t show it like I do. Of course, he did only turned 14 the week after losing his only sibling, so he wouldn’t show it like I do. That’s normal and understandable.

I think we are both bewildered, though.

Declan and I went to Norway last month to see family and friends. I hoped it would help us begin to heal in some way. It may have, and I think it did, but I’m not totally sure because I can’t see very clearly in this bewildered state. My mind races with contradictory thoughts, intertwined with numerous fears, for our futures. What is best for Declan now? What is best for me? What is best for us collectively? What is best for us individually?

I have no answers. Not yet.

I did decide, after years of contemplation, which bunad (traditional folk clothing which represents different regions of Norway) I someday want to get. That’s about as far as my decision making in the past 3 months has gone. Still, I’ll look forward to the day I go in for a fitting of my bunad and can wear it at a Syttende Mai (Norway’s constitution day) parade.

It’s a seemingly small thing in the scope of my life currently, but it’s the small things which are giving me reprieve from my life’s pain and bewilderment.

So what do I want to do with myself now that I am no longer a carer? Again, I don’t know. My health is not what it was years ago. I’ll be 57 in December. And to be very honest, in my broken, bewildered state, I wonder, how many years do I even have left? I feel panicked when I think of that, but it is a thought which comes to mind all too often lately.

Books. I have decided to try and finally write (ok, finish) the books I have started. But will that be enough to financially sustain us? Am I even capable of working a fulltime job as an employee anymore? Or will I be capable down the road and it’s just that it’s too soon right now and so this all feels too overwhelming?

Again, I have no answers. Not yet.

While Declan and I were in Norway last month, our family invited us to come back there next May for Syttende Mai to celebrate the national day with them. You would be surrounded by family, one cousin said, on that very special day…which is also the date Brendan Bjorn died. That is why it was suggested to me. It will be the first anniversary of his passing next Syttende Mai, and I’m thinking, at least right now, it would be a good idea to do that. The other option is for us to be home here in Ireland, just me and Declan alone, on what will be an extremely difficult day.

I have no answers for them. Not yet.

I won’t have a bunad by then, but hopefully I’ll have made good progress on at least one book.

I likely won’t be completely free of feeling bewildered, but hopefully much more so.

I won’t have both of my boys physically there with me, but I will have one in my heart and the other one whose hand I can hold.

I think for now I need to not expect the answers, but just allow more healing to happen.
The answers will come in time. At least, I hope they will.

10 weeks today since I watched my beautiful eldest son take his final breath. I can’t get the image out of my mind. Him, gasping. Me, crying as I told him I was right there with him. His brother, holding his hand as he watched it all unfold.

I tried.
I tried to forget the horrors witnessed in the last few weeks of my precious Brendan Bjorn’s life.

I failed.
I failed as the visuals of that genuinely soul-destroying time are now embedded in my psyche. I wonder now if I’ll ever be rid of those worst of memories.

I failed as I walked through shops in Norway thinking how I’d buy this shirt for Brendan Bjorn…and then I remembered.

I failed as I looked at the time while on “holiday” (by the way, it really wasn’t a holiday, it was an attempt to heal, even just a small bit) and I wondered if it was a good time to ring the Children’s Hospice to see how Brendan Bjorn was doing…and then I remembered.

My soul is torn in half.
If and when it ever does begin to heal, I know it will never be the same.

10 weeks on and I can still barely stand to look at photos of my beloved son because the pain is just too great. Like they are now, the tears come streaming down my face and I scream “I just want you back!”

I tried.
I tried to protect myself from getting COVID while travelling for the first time in years, but I failed. I tried to do the right thing, isolating for 7 days before returning home, which I desperately needed to do for a number of reasons. I tried to do the right thing, wearing an FFP3 mask at all times while travelling. May those who have judged me for this, never experience this hell I am going through.

When I walked back in the door to our home, the first thing I did was go to Brendan Bjorn’s urn. I rested my hands on it. I cried. I talked to him. I literally ached being away from what is all I have left of him, other than the horrific memories of those last few weeks.

I know there aren’t many people in the world who can understand exactly what I feel, this devastating loss of a child you tried to keep alive for nearly 18 years.

My soul is torn in half.
It is screaming in pain.

I don’t expect many to understand.