One year ago today (late February 2024), I sold “Brendan’s Bungalow” to the HSE Disability Services for the Southeast Region. I never thought I would move from that house – and in hindsight it is a tremendous regret that I’m struggling to deal with now – but I was having an emotionally difficult time in my grief walking by the room, multiple times a day, where my beloved son passed on in May 2022. As I said, I now desperately regret it.

The agreement was that the 4/5 bedroom, disability modified bungalow on half an acre would become a respite centre for disabled children like my late son, Brendan Bjørn. There is no other respite centre in County Wexford that can accommodate a profoundly disabled child who requires an overhead hoist. In my late son’s bedroom, there is just such an overhead hoist system, new and top of the line.

This home was to become a place where other disabled children, like my son was, could find comfort and laugh and fill the house with that special love once again, just as he did. This home was to become his last legacy.

A year on, the house continues to sit empty.

I drove by the house a few days ago. To see our former home in the hollow, disrespected, empty condition it is now literally makes me physically sick. I feel as if all of our memories, all of the respect due to my son…just EVERYTHING…is being trampled on with callous disregard. It feels like losing him all over again, and I can’t bear that feeling.

I have tried to uncover exactly why our former home still sits empty and I receive repeated replies about planning permission, budgets for ‘required’ work and HIQA requirements. Frankly, I hear bullsh*t because I know that where there is will (ie: political will), there is a way. I see so much spin from the Government about how they care about Disability Services. Article after article about needless expenditures from the Government from bike sheds to walls to unused art scanners, all tremendously overpriced and unnecessary. What IS necessary is respite for families with disabled children.

There are only two other respite centres which were offered at one point to my son when he was still alive, and neither of them could accommodate his needs. They were old, narrow hallways and doorways, tiny bedrooms where his wheelchair wouldn’t even fit, and no overhead hoist to get him in and out of a specialised bed (which they also don’t have). How they pass regulations I have no idea when I consider what I’m being told now about why our former home isn’t yet being used as a respite centre.

There is absolutely NO reason our former home can’t be used currently in the agreed upon way: As a respite centre for physically disabled children, even if it’s a day respite centre to begin with. I discussed this with the then-manager of the HSE Disability services and she fully agreed.
A year on, there is a new manager and they are telling me the home may likely be used for kids without physical disabilities. I may sound harsh here, but it’s children with severe/profound physical disabilities who have no options at all for respite in the region. It is for those children – like my late son – the home was intended for, agreed to be for, when I sold it.

I feel betrayed by the HSE Disability Services. I am hurt and angry. I am disappointed and heartbroken. I feel appalled.

And to be clear, toward myself I feel much of those same emotions, topped with regret, for having sold our home to the HSE in the first place. 2024 was probably the most emotionally challenging year of my life as I look back on it now. I thought I was doing something beneficial. Something good in Brendan’s name. Instead, 2024 turned out to be rife with bad decisions, lost dreams, failure, ill health, and the tailspin which comes with the grief of losing a child you fought for nearly 18 years to keep alive, but in the end, couldn’t.

If only I could turn back the clock. If only.

It still sits empty.

2 January 2025. Last year, 2024, was filled with countless struggles, likely on the back of poorly thought out decisions, those likely under the influence of grief tinged with desperately desiring changes. Quite the vicious cycle. The year ended with Christmas being the most lonely I’ve ever had, and frankly the most disregarded I’ve ever felt. Anyway, it’s over. Whew! On to the new.

So this is me, now landing in 2025 with no resolutions. Only hopes.

Resolutions have a way of adding pressure that leads to self-disappointment when they go unmet. Frankly, I have enough of that left over from last year, I don’t need more of it. So, hope. I’m going to write down 15 things – some big, some small – I hope will come to fruition. I’ll have to work at them, of course, but hoping sounds so much more positive and warm to me than a cold, hard, resolution.

Here goes, in no particular order:

• I hope to find a doctor, or doctors, who can finally resolve the debilitating peripheral neuropathy in my feet which has been plaguing me for about 4 years. It’s grown worse and keeps me from being nearly as active as I once was; as I want and need to be. Handing me a script for Gabapentin isn’t the answer. I hope to find one.
• I hope to finish one of the two books (if not both of them, I say cheekily) that I am working on by the end of 2025 when I’ll turn 60. (60?! That can’t be right!)
• I hope to find the self-confidence to not colour my hair anymore and just let it go grey…and be proud of it.
• I hope to lose weight.
• I hope to become more healthy.
• I hope to be less depressed.
• I hope to have less anxiety.
• I hope to be the best parent possible to my wonderful son, Declan.
• I hope to learn the art of letting go while holding on.
• I hope to visit friends in Scotland and Yorkshire during the year.
• I hope to develop more inner peace.
• I hope to make new friends, ones that are true and present.
• I hope to be a good friend in return.
• I hope I still have a positive voice in disability and carer advocacy that will result in much needed improvements in those communities.
• I hope to release the dark despair while gaining the lightness of hope.

Here’s to hope. May we all have more of it in 2025.

For you, my angel boy, Brendan Bjørn, because you were the embodiment of hope, and for you Declan, because you give me hope for the future.

It’s the 1st of October 2024, your 20th birthday, and you should be here with us, my beautiful son, to celebrate. As we have done the past two years on your birthday without you, your brother and I will light the candles on your birthday cake, sing to you, talk about you, and shed happy and sad tears in equal measure.

20 years ago today, you made me a mother. You should be here still.

Today, your brother and I are moving back to County Wexford. It seems somehow fitting that it happens to be on your birthday when we return to the county where you spent your last five years of life…and where we said goodbye to you on that unimaginably painful and traumatic day in 2022. The time between now and then has been filled with such uncertainty, moving here and there and here again, breaking down, being lost, and making bad decisions amongst all the pain and confusion.

I’ve sadly discovered that most people don’t understand and thus can’t empathise with the trauma of losing you and just how deeply it has affected me since.

People don’t or can’t comprehend what it is like to have fought so desperately hard to keep you alive and healthy every single day for nearly 18 years, only to see you waste away before my very eyes.

It shattered my spirit.

I am indeed my own worst critic, frequently filled with disappointment in myself, but it’s obvious that some others share that disappointment in me, too, because when I’ve reached out for help or even simple compassion in recent months, it’s been refused. “You always land on your feet, Tracy” and “You’ll figure it out somehow” are repeatedly heard. Then at other times I’ve been met with complete silence, which honestly feels even more dismissive than directly being refused help or a compassionate ear. The sad irony of all of that is it results in me feeling even more alone, more lost, and even more resigned to the feelings that often overwhelm me.

Breakdowns come in many forms I’ve learned.
2024 has demonstrated mine.
…I say as if anyone was actually listening.

But alas, here we are at today. Your 20th birthday, my sweet, precious, beautiful angel boy. I close my eyes and focus on that handsome face of yours with the beaming smile and eyes full of love and joy. It gives me moments of peace.

I will never forget the moment you were born and the doctor said “You have a boy!” I will never forget that first look, that first kiss, our first snuggle.

I will never forget that last look, that last kiss, our last snuggle.

And I pray that I never forget all of the countless cherished looks and kisses and snuggles over your 17 years, 7 months, and 17 days on this earth with me.

Happy 20th birthday in Heaven, Brendan Bjørn. Thank you for the gift that was you for the years I was blessed to have you with me. How desperately I wish you were still by my side! I hope and pray that you and the angels are celebrating this very special day when you first came into my arms, just as your brother and I will be celebrating it with you lovingly in our hearts.

I love you baby with all that I am, always and forever.

Today is Sunday, 1 September 2024. The start of a new month as we head into my favourite season that is Autumn. It’s not yet 9am and I sit hear watching Declan sleeping across the room from me. We’ve been in a one room holiday let for the past 24 days. Me, him, and our two dogs. Tomorrow we move to a different holiday let. In essence, or is it in fact, we are currently transient; dare I say homeless. I’m struggling with it all.

What’s wrong with me?

I have what’s called Long Covid (You can read a good article about it here). It’s the result of the first covid infection (I’ve had 3) I contracted in April 2020. A few weeks after that infection, I developed what is called Peripheral Neuropathy in my feet. I spent two years trying to get answers from doctors before finally going to a private neurologist, having numerous scans on my brain and spine to look for causes, and along with other symptoms, she diagnosed Long Covid.

What’s wrong with me?

For me, the Peripheral Neuropathy (You can read more about the condition here) in my feet manifests like this: It’s 24/7. It never stops. It is a randomly alternating, yet most often simultaneous, combination of numbness, pins and needles, off-the-chart sharp, shooting pains, a feeling that I’m wearing 3 pairs of thick wool socks, a feeling that my skin is being pulled tight, hypersensitivity to touch where even bed sheets cause great discomfort as if my feet are raw, a feeling that my feet are swollen but they are not, a feeling like something is crawling under my skin but nothing is, a burning sensation, and an insatiable itching feeling under the skin.

Not all of those symptoms occur at once, but every day there are at least 3 or 4 of them simultaneously. I wake up feeling it. I go to bed feeling it. I am never NOT feeling it. I am on Gabapentin at night for it but it doesn’t take the pain or sensations away fully. It also comes with side effects which keep me from taking it during the day. (I’m on a mission to find out if there are any other treatment options because frankly this is driving me around the bend).

The more I walk during the day, the worse the evenings are for me when I end my day. When I do walk, I often can’t feel my feet properly so I may stumble or lose my balance.

What’s wrong with me? Long Covid.

I also ended up with adult-onset asthma, vertigo and that elusive ‘brain fog’ due to that Covid infection. Some people don’t believe in Long Covid, but post viral infection damage has long been known to the medical world. It is real. There should be no doubt by anyone. God knows I wish none of this was happening to me! I do not want feel this way or have this pain or have trouble thinking clearly or making good decisions at times. I want to be fit, healthy, capable, able…but I’m not, and quite frankly, that is breaking my heart. It scares me when I think about the future and my son who I’m watching sleep across the room from me now. My condition scares me. Between losing my beautiful eldest son Brendan Bjørn two years ago and my health struggles of the last four years, I am reeling. I am worried. And I am scared.

That’s what’s wrong with me.

It was just over four months ago that I made a decision to follow a long-time dream of mine: to live in Norway, the country I grew up hearing tales of from my mother; tales passed down to her from her mother who, having being born to Norwegian parents, once lived in Norway. It’s an identity I’ve had since childhood. After losing Brendan Bjørn in May 2022, I started to seriously consider following this dream to live in Norway. Some called me brave for making this move. Others likely called me foolhardy…or maybe that is just what I am calling myself now?

A swing and a miss, but at least I got up to the plate.
A fall complete with scraped knees, but at least I took a step.
A dream that didn’t work out, but at least I followed that dream.
Right?

We are coming back to Ireland.

No doubt, this has been an expensive dream to follow and it has cost me a bit more of my tenuous health as well. I will always love Norway and will return for frequent visits to our family here, God willing. And if Declan so chooses one day, he can return to live here in his adult life. But for me, with my chronic health and disability issues, with my age fast approaching 60, it is simply just too hard for me to make it.

I kick myself now most days.
My heart in tatters.
The should-haves and could-haves flood in as regret.
But at least I tried. At least now I know.

I aim to have us back in time for Declan to start 5th year, back amongst some of his childhood friends. There is a lot to be said for that and he’s looking forward to once again being close to them. Childhood only lasts so long and he will all too quickly be an adult going his own direction, wherever that may take him.

So, yeah. What more can I say? This is the latest news. Getting ready to move back across the North Sea and scouring the internet sites looking for that elusive rental in a select area in Ireland that will allow us to keep our 2 dogs with us until we find a home.

We are coming back to Ireland.
I’m somewhere between brave and foolhardy.
But at least I tried.

Today marks two years since losing my first-born son, Brendan Bjørn. I was blessed with him for 17 years, 7 months, and 17 days. He died on the 17th of May 2022, after having slowly declined over a few months, his gut unable to absorb the special peg-fed formula which had previously sustained him. He wasted away (what an awful expression, but I’m at a loss for other words to describe it so accurately) in front of my very eyes. Simply put, it was horrifying. I couldn’t change what was happening. I had no control. The child I had fought year after year to keep healthy and alive was dying, and I could not make him better this time. I couldn’t control it. I couldn’t change it.

I could not stop it.

I’ve not been the same person since. Two years on, and I know that I will never be the same person I was before he died.

I’m still trying to pick myself up off of the proverbial floor.
Some people understand this fact.
Other people seem to be indifferent to, or unaccepting of, this fact as they haven’t walked in these painful shoes.

I wish I could adequately explain to you all just how fragile life truly is in a way that would shake your soul as impactfully as losing your child teaches you. That kind of way that isn’t just a surface cognition of the importance of life, but the deepest, most primal realisation that embeds in your very core, flying through every part of your cellular make up. Yes, the spiritual awakening or realisation that ironically, painfully, also destroys a part of your spirit when you are holding your dying child as they gasp for their last breaths is that deep.

I wouldn’t wish this experience on my worst enemy, but the understanding of the fragility of life, well, that I would wish on the world. Maybe then the world would be a far better place.

I was watching a show last night and there was a line delivered by one of the characters that resonated with me. I played it over again. I soaked it in and said to myself, yes…this. The character was talking to someone shortly after losing the man she loved. She said: “How careful we’d be if we [knew] which goodbyes were our last.”

Yes…this.

The difference when you’re the parent of a very medically-fragile, profoundly disabled, life-limited child, is that you already KNOW to be careful in that regard. You know in your heart that every goodbye, every goodnight kiss, could be the last. Even so, when that time does come for it to be the last goodnight kiss, the last goodbye, the pain isn’t any less than if you didn’t know it was going to happen. I actually wonder now, is the pain even greater because for so many years, parents like me on this journey worked day after day, year after year, desperately trying to keep our precious child alive; to put off that last goodbye or last goodnight kiss?

Two years on and I still ache to give him one more goodnight kiss on his tremendously soft cheek. I close my eyes and I can feel his face in my hands. I see his blue eyes beaming up at me, just as they did for over 17 years. I can feel his thick, brown hair as I run my fingers through it, and I can hear his laughter. It’s when I open my eyes to the reality of the day that the wave of grief crashes down to drown my moment of peaceful memories.

Today, I will take many moments to close my eyes and once again feel my beautiful angel Brendan Bjørn. And when I do open my eyes, I will look at my younger son, Declan, with so much love and admiration. This journey with Brendan Bjørn wasn’t just mine. It was his, too, and that cannot be forgotten. He was right there with me 2 years ago today, holding his big brother’s hand while I held the other. He was there comforting him, loving him, and talking to him as his only brother left this world. Indeed, the future journey is now for him. I’m just fortunate enough to have been along for the walk with them both.

As I type this latest blog, the rain is battering down on the window of my cousin’s farmhouse. The snow blanketing the ground is giving way to the coming of a new season and the grass is beginning to make its first appearance of the year. It’s a good time for new beginnings, it tells me.

Declan and I have moved to Norway.
Brendan Bjørn is surely here with us in spirit, too.

Another big bit of news (as if what I just said wasn’t big enough, right?) is that we sold our disability-modified bungalow in County Wexford to the HSE Disability Department with the plan for it to become a respite house for disabled children in the region. This is part of Brendan Bjørn’s legacy, to be sure. My hope is they will call it Brendan’s Bungalow (this was Declan’s idea for a name to honour his brother).

I couldn’t have asked for anything better than to have the home filled with the love and laughter of such special children like my angel boy. And of course, not to forget parent carers, to give them a bit of respite from the often exhausting work that is being a 24/7 carer.

My heart is truly full knowing the home will serve such a needed and beautiful purpose!

That’s not to say this hasn’t been a very difficult decision and process. On the day we moved out of the house, I stood in what was his bedroom and I bawled my eyes out. Sobbed uncontrollably. This was the room where he laughed, loved, and enjoyed his family and life. But this was also the room where his last months then weeks were spent in pain, struggling, slowly drifting away from us until the horrific final moments of his gasping for those impossible to find breaths.

No, I couldn’t stay. The memories are too painful.

I was afraid his spirit would remain in the house, and as I stood there crying, I asked him to stay with us. It was in the airport a few days later, as we were going through security, that I knew he did just that. Every time we flew in the past, airport security would, for some crazy reason, think Brendan Bjørn was a likely candidate to swab and pat down for explosive residue – his wheelchair, his bag, the palms of his hands. Then there I was in Dublin Airport security, just a few days ago now, with his ashes in a box in a bag. I was asked what was in the bag and when I told the man, he was very kind and told me to wait. He came back with his supervisor and she told me they’d have to swab the box.

And there he was, Brendan Bjørn, having a laugh going through airport security one last time. It was that moment I knew he was with us and it made me smile.

The past few days have been non-stop here in Norway trying to get things organised and settled for our new beginning. There is still MUCH left to do, but for today, I’m taking a bit of a break from the whirlwind. The familiar sound of rain on the window is acting like a tonic to calm my worries, even if just for today. I think an afternoon nap may even be in the cards.

I have so much to be thankful for, and indeed I am.

Here’s to Ireland.
Here’s to Norway.
Here’s to the coming of a new season.

Tomorrow brings the start of 2024. I won’t write about resolutions because they never last through January, do they? Instead, I’m going to write about things past and things to come. Dreams dashed. Goals to conquer.

And of course, I will write about matters of the heart.

2024 means that I will no longer be able to say “My eldest son, Brendan Bjørn, died last year.” It will now be said, “My eldest son, Brendan Bjørn, died in 2022.” You may think that slight change of wording isn’t important, but in matters of the heart, it certainly is. There is this feeling of it putting his living memory further behind in the years…and a concern that others may think the grief is now more distant rather than it still permeating every fibre of my being, every waking moment, and every breath taken.

Those of us who have lost a child will understand.

January 2024 will mark 16 years since I worked my last professional job – one I absolutely loved – as a School Guidance Counselor. As some of you know, I was fired for the simple reason of being pregnant and unwed. I was told that I ‘cast grave discredit upon the parish and school’ and that I ‘tarnished the reputation’ of the school (FYI: it was a Catholic school in the US). I was escorted off the school grounds with 2 days notice, no income, no health insurance, and unable to say goodbye to all of the students I had grown so close to, many of them crying as I left…just as I was.

This defining moment in my life will definitely be a chapter in my book and 2024 will see me dedicated to finally finishing that book.

February 2024 will find me and Declan leaving Ireland. This beautiful island has given much to us, but also taken a lot from us. Have no doubt, though, Ireland will certainly always be etched upon our hearts. And, when the time is right, I will announce a wonderful legacy of Brendan Bjørn’s here in Ireland that I’ve been working on. But for now, suffice to say, we will be moving near to family. I will be settling Declan in the most solid, secure, and holistically healthiest surroundings I can think of so that when he grows to be a man, he is surrounded by what I wished for in my own early years but didn’t have.

A parent’s dream should always be to wish more for their children than what they had. May it be so.

Syttende Mai (17 May) 2024 will be 2 years since we lost our beloved Brendan Bjørn. Declan and I will be celebrating the day as Syttende Mai while simultaneously holding close and honouring his memory. I’m not sure how we will manage that mix of emotions, but we will try our best. And again, we will do this surrounded by the warm support of family and hopefully by then with a few new friends as well.

October 2024 will bring what would have been Brendan Bjørn’s 20th birthday. I can’t even fathom that now and I’m sure the day will hit me hard. May I always be comforted by the 17 and 1/2 years I was blessed with him.

And finally, Christmas 2024, you will find us sitting around the family dinner table sharing a big Christmas meal, highlighted by love and laughter and what I know will be a sense of peace as the year will wind down to another close. It will be a sense of peace that my heart so desperately aches for and indeed it needs.

I know this coming year will be quite challenging in all we have planned. I’m 58 and my soul is weary in many regards. Yet, I hope that with these changes, it will be revitalised. I pray that I will be able to finally get my health issues tended to and bring them to a much more manageable, less troublesome, place. I look forward to finding work that sustains and fulfills me. And most of all, I hope Declan truly blossoms with our new life, in a new school and the change of environment.

I say goodbye to 2023 with so many goals, hopes and dreams in store for 2024, while also remembering the past – both distant and recent – which has brought us to this point today.

2024 will definitely be a momentous chapter in the book of our journey.

May your New Year bring you blessings and dreams fulfilled, too.