The corner where love could be


This blog piece isn’t going to be one of logic and advocacy. It will be one borne from the raw emotion of being a lone parent carer. It is about the corner where love could be.

I took the Christmas tree down today. I always find it a sad occasion, but especially so since Brendan Bjorn was born. And each year, it becomes that bit more sad. I never know if this was his last Christmas. Frankly, I never thought I’d be blessed to have him for 16 Christmases (and counting!). So, as I remove the decorations, some of which are dated for years past with photos of him and Declan, a deep feeling of sad sentimentality comes over me.

The corner was left bare after I removed the tree. I stood there just looking at the corner. The music playing in the background seemed to be one love song after another. It left me in a heaping mess of tears and reminded me why I don’t often listen to music: it touches me too much.

Earlier this morning before taking the tree down, I did an interview for an upcoming article about being a carer. In particular there were questions for me specific to what it’s like to be a lone parent carer. How is it different than carers who have a partner, I was asked. My answer? In every way imaginable. 

So there I was. I had these questions, and indeed my answers, floating around in my head while taking down this symbol of love while the music of love infused with my thoughts. And it dawned on me –

There’s a corner in my heart where love could be, as well. 

I have to laugh now as I write this piece. No one in their right mind would sign up for such a journey with me. It involves too much personal sacrifice to be a fully engaged partner to someone in my situation. I get it. I appreciate it. I respect it. But no, I don’t like it.

Yet, it still leaves that empty corner where love could be. 

It’s been a few years since my last serious relationship. I won’t go into details, but suffice to say it didn’t end well and left me with what will surely be unpleasant trust issues to be tackled should any man again dare to brave entering a relationship with me. I’ve pretty much resigned myself to being alone on this journey, but that doesn’t mean I don’t wish it could be different at times.

One of the answers I gave in the interview was about not having someone to curl up with for comfort at the end of the day. There’s a powerful healing and recharging of spirit that comes from such a gentle physical connection like that of being held by someone with whom you share love. That genuine intimacy which is sharing your being with someone out of love for them. It is a beautiful thing. One of life’s most beautiful things, I think.

But, I will leave that empty corner where love could be to the future, for I know not what could be or will be.

All I know is that I’m cognizant of just how that empty corner feels.




A thousand new years


Today is 31 December 2019. Tomorrow, a new year and a new decade begins. New Years is always a time of reflection, but I find this year weighing on my mind in a different way. I saw a post on Twitter the other day about “the 20’s” and it dawned on me that my own mother was born in the 20’s – but not the 20’s that this person was referring to! And with that, my mind began to contemplate the generations.

I’ve been researching my family genealogy for over 30 years now, but it wasn’t until I had Brendan Bjorn and Declan that it took on a new meaning to me. I do this for them now…well…mainly for Declan. Brendan Bjorn will never have children of his own, which is a fact that is never far from my mind, but especially as I look back over the years of our family tree.

As a carer, I also think that allowing my mind to wander into the past is a form of escape from the daily stressors right in front of me present day. When my back is hurting and I can’t get out of the house with Brendan Bjorn, I can get lost in history. Our history. I can turn it into a gift of heritage for Declan’s future. My parents and grandparents are all long gone. The closest family we have now is in Norway. Being surrounded by a supportive, loving, family is something I had always dreamed of since childhood. It was never to be, though. Today, it is something I strive to give to my sons. 

I turned 54 this month and that also gave me more cause to consider my life : past, present and future. Knowing your life is half over (at least) brings an urgency to living. I know all too well how fragile and fleeting life can be, yet I still have days where I’m so emotionally exhausted I think what’s the point of all the struggle. I may not have the answers to that question, but all I have to do is look back over my family tree and see the generations who came before me and who, had they not existed, I wouldn’t be sitting here now writing this blog about my own life. There’s a profoundness in that knowledge that I think needs to be honoured and remembered with some reverence… 

If it wasn’t for a Viking called Ragnvald Eysteinsson having a son called Gange-Hrólfr “Rollo” Ragnvaldsson over a millennia ago, I wouldn’t be here.

If it wasn’t for Henry FitzHugh, 3rd baron of Ravensworth in Yorkshire, having a daughter called Eleanor in 1397, I wouldn’t be here.

If it wasn’t for Phillippe Daniel Kellogg marrying a woman called Annis and having a son called Martyn in 1595, I wouldn’t be here.

If it wasn’t for Ole Jonsen Nygårdshagen and his wife Mari Guttormsdatter Nygaarden having a son they named Guttorm in 1770, I wouldn’t be here.

If it wasn’t for Mae Bjørneby having a daughter named Joan in “the 20’s” as mentioned above, I wouldn’t be here.

And if I wasn’t here, neither would Brendan Bjorn and Declan be here.

Now that is something to really think about, isn’t it?

For this new year, this new decade, I hope the past can lend strength to today while bringing us smoothly into the future. We may only travel this journey one day at a time, but before you know it, a millennia of history has been written. May we all do what we can to make it the best future possible and worthy of our ancestor’s gift of life.



Another day. Another year.


It’s my birthday today. I am now 54 years old. I look at that number and it’s surreal to see. How can I be that old? It’s funny how notions from childhood of what certain ages represent still remain with us as we ourselves age. But then again, life doesn’t always go according to our childhood dreams, does it?

Today I will do nothing different for my birthday. There will be no meeting with friends or going out to dinner. The loneliness of the life of a full time carer, who is most often home-bound, will remain today. As I am most of the time, I will be home caring for Brendan Bjorn. I’ve been fighting a respiratory illness the past 2 weeks which he has now also come down with, so no school for him today. Declan has also caught this nasty virus and is home from school, too. So, double-duty for me today.

Despite the exhaustion of non-stop caring with no respite or help, I know that I have a great deal to be thankful for today.

Declan woke up and sang Happy Birthday to me. A nasally, plugged nose version, but endearing all the more!

I am a mother to 2 beautiful boys. A blessing that for many years, and after 5 miscarriages, I never thought I would get to have.

We have a forever home, thanks to the graciousness of many people – and one in particular – whose hearts were filled with love and compassion.

And despite my own health issues, I’m thankful to still be able to care for my sons. At times I really struggle with those issues. At times I complain about that struggle. But I am here, now 54, and doing everything I can to give them both the best life possible with their own unique needs.

So, yes, I’m going to say Happy Birthday to myself! I’m going to try to embrace being 54 rather than feel embarrassment at the “old” age. I’ve lived a hell of a lot of life in these 54 years. I’ve got the scars, invisible and obvious, to show for those adventures. But, here I am…still alive, still fighting, still hopeful for many more years to come with Brendan Bjorn and Declan, for they truly are my world.




2 sons divided by stairs. A mother divided between 2 sons.


Today the boys and I spent 3 hours away from home so that Declan could take the assessment for the Center for Talented Youth program via Dublin City University. He was invited to participate because of his very high maths score on the national standardised test. So, off we went, me proud as punch of my youngest son and excited for the possibilities ahead of him.

We drove up to the beautiful centuries old buildings of the IT Carlow Wexford Campus. The first hurdle was seeing all the other parents with their children go up steps to get in the door. “Around the back of the building” I hear a man tell me. Sure enough, there was a ramp around the back. We get inside and discover hurdle number two.

Declan’s assessment is being done upstairs and there is no lift in the building. 

I give him an encouraging talk and send him alone up the stairs amongst all the other families. Declan, my sweet youngest son, is terribly shy and I knew he’d be nervous beyond words. Out of an office comes a lady who turns out to be an instructor. She kindly stood with Brendan Bjorn while I ran up the stairs to get Declan sorted and explain to the CTY team why he was up there on his own. And with that, back down the stairs I ran. The instructor had a meeting to get to.

About 30 minutes into the assessment, Brendan Bjorn began to fill the hallway with quite the pungent odor. Yep, he pooped. There was, of course, nowhere to change him.

He had to sit in a poop and pee soaked nappy for 2 hours until we got home. He deserves better.

Brendan Bjorn and I spent some of the time waiting in the canteen. At a table near us, 4 women sat chatting. They were obviously instructors at the school by the conversation being had. I sat there remembering when I used to be just like that – sitting at my place of work having an intelligent conversation with my professional peers. I nearly broke into tears. All of that was a lifetime ago.

After the assessment was done, it took a few people going upstairs to look for Declan as other kids were beginning to come out of the room. Eventually one of the assessment instructors came down and said she’d go back up to tell the other instructor to send Declan down. Definitely a group effort, but it was done!

As we drove through Wexford town on our way home, we discovered there was an ice skating rink put up on the quay. It was surrounded by Christmas lights, making it all very festive and inviting. I found myself once again having to apologise to Declan because we couldn’t stop…because of his brother. I left the last part of that sentence out. It’s standard unspoken understanding in our house now. I don’t want it to be, though.

More and more, I want to be free to take Declan on adventures, big and small and in between. 

I wanted so desperately to stop and go ice skating with him! He’s never been. In truth, there is so much he’s never had the chance to do. I wanted to hold his hand as we skated around the rink and before he’s of the age he won’t want my hand in his any more. He still does, you see, and that special time of youth is quickly passing by. With each year that screams past, I can feel my anxiety screaming internally along with those precious, fleeting years. I need to experience these things with Declan now, and I simply can’t do most of those things while his brother is with us.

And I hate myself for even thinking this way.

The fact I’ve gotten to the point of being able to say anything remotely close to this tells me just how burned out I am becoming as a carer. 

I just want respite. Strike that. I need respite. Regular, weekly, respite. I want to be able to leave the house with Declan…just the two of us…free to discover what little adventures await us without having to worry about stairs or steps or lifts or narrow doorways or rain or wind or nappies or feeding pumps or gagging or vomit or seizures or pressure sores or…

…without having to worry about anything or anyone but us.





International Disability Day


Today is International Disability Day. No, I’m not disabled. I can only write from the perspective of caring for my profoundly disabled teenage son, but I will write about disability today because I am his voice.

Not enough is said about the needs of the profoundly disabled. Those children and adults who are fully dependent upon a care giver (usually a family member) to assist with every daily care task there is to be done. I’m talking about those children and adults who are totally incapacitated. This is the sub-group of people with disabilities that I am writing about today. People like my son, Brendan Bjorn.

Generally speaking, profoundly disabled, incapacity children and adults depend on their carer to be their voice in the fight for their rights and needs. So, in my opinion, you cannot have a discussion about disability rights without also including the carers of those with profound disabilities.

I am going to emotionally vomit here, so hang on tight. (I got that phrase, by the way, from a friend of mine who lost her daughter recently to complications of the same condition my own son has. It’s a great phrase.) I could write with a tone of professionalism and articulation that would represent my graduate level education, but I’m not going to do that today. I am going to write from my unfiltered heart today, with all the raw emotion that I feel.

Here comes the emotional vomit.

I’m pissed off. I’m disgusted, angry, hurt and heartbroken. I’m also exhausted and don’t want to be a carer anymore. I just want to be his mother. I want someone else to do the nursing care duties for me. I’m tired of changing nappies, administering medications multiple times a day, hearing alarms going off even when they’re not, lifting when my back says don’t do it…and so much more. I’m tired of being a nurse 24/7. I’m so damn tired.

Go back to me being pissed off, etc. I feel that way because of the feeling of not wanting to care for my beautiful, first born son anymore. Pissed off because if profoundly disabled people like my son had the full, proper supports, services and equipment they required, parents/carers like me wouldn’t be driven to this point of wanting to give up on someone they love more than life itself! Is anyone really f*cking listening?! No.

No one is really listening. 

I’m sure I’ll get a few messages saying, “I do hear you, Tracy” but that is where it will end. That’s where it always ends. I’m sorry, but to be blunt, people in my situation don’t want or need platitudes or words. We need action. Nursing help in the home. Respite away from the home. A f*cking overhead hoist system to safely lift my completely incapacitated adult sized son with a spinal fusion in and out of his bed rather than me f*cking lifting him manually on my own! Time off of this 24/7 work saving his life daily while at the same time knowing he has a life-limiting condition and so my work is, to be frank, saving my child who I know will one day die. Hard to read that, isn’t it? Imagine living with it every day.

Do you know how much it weighs on a person’s heart, mind and soul to devote every fiber of their being saving their own child knowing that one day they may very well wake up and discover their child did not wake up? It is horrific! And yet there are no counseling supports provided for parents in my situation in Ireland. What an appalling state of things.

People like my son aren’t valued by the society or the government. If they were, I wouldn’t be writing this piece with such emotional vomit. Instead, I’d be talking about how great it is that I can continue with my career while I know my son is safely being cared for by a nurse at home or how my other son would have a typical social life and be involved in activities outside of just school or how he and I would have the freedom to go anywhere we want pretty much at the drop of a hat because there would be a nurse to care for his brother at home.

We could be “typical” – even if only for those times when nursing help was there to provide care. I’ve not had any in-home nursing respite provided by HSE since summer of 2017. I’m tired.

Talk of inclusion in Ireland at the moment is remiss as well. Another thing that pisses me off. Those organisations who have the loudest voice don’t include the voice of the carers of the most profoundly disabled children and adults in the country. Why? Because people like my son aren’t valued, as I said above. And it is this fact which leaves me heartbroken and disgusted.

It’s not just the government who are guilty of this value judgement and prejudice. It’s the culture and the society, too. And it makes me damn sick because it is that same judgement of unworthiness which translates to a lack of care and support services for the profoundly disabled children and adults, and ultimately for their carers, too. 

What can YOU do to fight for the services and support which children and adults with profoundly disabilities need? Ask yourself, please, because carers like me are ready to give up caring.


Levels of disability. Levels of caring. A question for discussion.


When a child is assessed for services or indeed in a medical setting, there are a series of questions which determine the level of disability. Some of the areas considered are ability, or lack thereof, to perform any daily care activities such as getting dressed, bathing, or eating. Other areas considered would be motor ability, for example when assessing Cerebral Palsy as there are various types of Cerebral Palsy and varying levels of severity. (ie: can the child sit, walk, roll, or hold an object in their hands.)

Assessments are done for respite, educational services, nursing services and beyond. They assist the care provider in knowing what level of services will meet the requirements of that particular child. As a parent, these questions can bring up a lot of emotions as more and more boxes are ticked noting their child is unable to perform each task. To this day, I dread the assessments because of this, and the repetition of saying “just mark everything as a full assist in all daily living activities.”

But I will say this: Over the years, those questions do get a bit easier to handle. 

This point is where I’m going to bring up being a full time carer. I realise in advance I may upset some carers, but I genuinely hope to not do so!

Just as with the varying degrees of disability, there are varying levels of care work provided. It’s actually obvious, to me anyway, that a fully incapacitated and medically complex child or adult will require more intensive work by a carer than caring for someone with mild disability or indeed without any disabilities at all. This brings me to my point – my question, really:

Should family carers also be assessed (as are their loved ones) on the level of care they provide to determine the supports and possibly even level of remuneration for their work? 

If carers were assessed on the level of care work provided – hours spent caring daily, level of medical knowledge and skills required, level of physical work required, for example – could this lead to more supports for those carers who are providing the more intensive caring work? 

I think most full time carers need more support. I do think, however, that the carers who are working around the clock, literally, caring for the most profoundly disabled, are in the most need of supports…just as their loved one is in need of the most intensive caring because of their level of disability.

Let’s have a discussion on how best to support the carers of loved ones with profound disabilities.






Dear consultants, GP and nurses


I have an invitation – no, more of a challenge – for all of the consultants, GPs and nurses reading this blog piece. I’m doing this because my last blog piece (see here) to the government saw zero responses from anyone in politics. I know, I shouldn’t be surprised. So, I am holding out hope that those of you in the medical professions will come through instead.

Over the past while, I’ve seen countless family carers, such as myself, get behind the nursing strikes and the #CareCantWait campaign supporting consultants and GPs. Carers support all of you because you are the ones who have dedicated your careers to giving expert care to our vulnerable family members, and indeed at times, saving their lives. We could never adequately voice our gratitude for the work you all do. 

Having said that, we don’t want to see you unless we absolutely have to – and I say that with a dash of humour but fully in truth. 

We support your campaigns for reforms and improvements in your various sectors of the health system, and in the health system overall. We do this because we are the *frequent fliers* in the system. We know it forwards and backwards. We live it every single day, but usually at home. And, we know just how important your work is to our fragile loved ones.

What I ask here is two-fold:

  1. Recognise that we, as family carers, are on the very front line of care. We are the ones who often make the difference between a complex case landing at your door or exam room or ED, or being handled at home. We administer life saving medication, suction airways, provide for orthopaedic care concerns, clean and dress chronic skin wounds, provide emergency seizure care…and so very much more.
  2. Support our fight, which is similar to yours, for reforms and improvements. We don’t have a union or a professional body which advocates for our rights and needs, which are also the needs of those we care for – your patients. We need your collective voice, understanding the vital work we do, to join with ours as we advocate for more supports, improved services at home and in the community. Maybe then the government will take family carers seriously and listen to our concerns.

As I discussed in my last piece linked at the start of this blog piece, if family carers can no longer care, or care as well as they would hope to do and are expected to do, the health system that will end up even more overloaded than it already is now. You will see our vulnerable family members more often. You will see us carers more often, exhausted, physically ill and/or hurting with injury from caring with no supports.

We are all connected in this way – your profession and our work as family carers.

Let’s work on this together.