I’m sure that I am not the only one who has been in a dark place considering the world events of these past four weeks. For those of us that already walk this journey while dealing with depression and anxiety, the addition of global geopolitical conflict doesn’t help matters. There’s another dimension to it that adds yet another layer to the inner struggles I’ve felt lately: The fact that it is my home country, the USA, that (along with Israel), has yet again attacked another country.

During St. Patrick’s Day week, Twitter/X was awash with the annual debate over who is truly Irish or who is a ‘plastic Paddy’. Every year it’s the same back and forth between Irish Americans and the Irish in Ireland. Generally I just stay out of it and roll my eyes. This year, I did a 24 hour poll on the subject asking what should non-Irish immigrants who are naturalised citizens of Ireland call themselves: Irish or just an Irish citizen. You can see the results below.

I figured this is what the result would be. Nearly 50/50.

I’ve been told more often than not that I am NOT Irish, but solely an Irish citizen. Fine. I accept that now and resign myself to never contemplating again that I’ll call myself Irish. That 50% of you out there win. I’m not Irish, not by citizenship or DNA, and nor have I never claimed to be ‘Irish American’. Now when I’m asked if I’m Irish, I don’t say yes. I say specifically that I’m an Irish citizen.

Why the differentiation?

Because I’m tired of being told I’m not Irish.

Because I’m tired of being on the receiving end of negative commentary when I tell people I’m from America.

I’m in this no man’s land of living in a country where I am a citizen but I’m not really a member of it. I’m not Irish. I’m American, and although I don’t live there anymore, the often bad politics of America on the global stage follow me in a widely-painted judgement to the point that I hope when I open my mouth to speak, people don’t recognise my accent or ask me where I’m from. I’m so tired of that question. If they ask and I tell them, the next question is inevitably what I think of Trump.

• for the record, I can’t stand Trump or his politics, but there are many things I miss and love about the America I grew up in. BOTH can be true.

So yes, I’m tired of being in no man’s land. I wish I had a close community around me, decades in the making, where I felt 100% at home, accepted, liked, maybe even loved…but I have none of that. I know part of that is of my own making via decisions I have made in the past, but a part of it isn’t – and this is the part I’m writing about today.

This is all just to say I truly wish people could understand what it’s like to walk in these shoes in a land not of my own. Those questions and comments matter. Be mindful when you ask them and make them.

I feel like I don’t belong here, yet I feel like I no longer belong there.
That no man’s land is a very difficult place to live.
And it leaves me wondering where home actually is.

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The world has been captivated by Punch, the little macaque monkey who was rejected by his mother. His caretakers at the Ichikawa City Zoo in Japan gave Punch a stuffed toy monkey in an attempt to replace his mother. As we’ve all witnessed in the countless videos and photos, Punch clings to his stuffed toy monkey desperately as he seeks the affection all infant primates – including us humans – long for and in fact require in order to thrive.

If the videos of Punch over the past few weeks have brought you to tears or made you smile, have you asked yourself why his story resonates with you so much?

I have asked myself that very question, and I have the answer: Community.

Community. As humans we all have an innate longing for community. A sense of connection. An acknowledgment of belonging. An unshakable understanding that we are loved and accepted.

If you follow my journey, you know that I have been working on writing my first book. I’m at the point of my introspection in telling my tale where community and hypocrisy have become very pivotal, central themes. I believe this is why Punch is so relatable to me. I can sympathise with his feelings at being cast out, rejected, and left alone to try and navigate in a community that he thought would provide him safety, warmth and acceptance.

I was once in a community which included faith, work, friendships, security, and a sense of worth. I felt accepted and loved. I didn’t get a lot of that growing up in a dysfunctional, alcoholic home life. But there, in that community, I felt a part of something bigger than myself. It provided all of those innately desired aspects of life that we long for, be it knowingly or not. When hypocrisy was interjected into this community that I was comfortably a part of, all of that was ripped away from me.

I stood there like Punch, holding a stuffed monkey, wondering what I had done that was so different than the other young monkeys to warrant my being cast out.

Of course, humans are not macaques. Yet we, too, create a hierarchy of judgement in various communities. I’ll leave the lengthy prose for the book, so for now let me just say that it hasn’t been lost on me just how deep of an impact being cast out and rejected actually can be. As I watched the videos of Punch being rejected merely for wanting love, I actually shed tears. And as I sat down to try and continue writing where I’d left off in my book, I thought of the other teacher who was also pregnant and unwed yet wasn’t cast out of our faith-centered work environment. A quick online search and I can see that in fact she’s still there, 18 years later, secure and stable and accepted. I think of the parish and school priest who a few years ago was arrested for aggravated DUI yet saw no repercussions, wasn’t publicly deemed to tarnish the reputation of the parish and then be cast out. Instead, he remains accepted and secure in his position and community today.

Being cast out of one’s community is devastating, especially when you have no soft and secure place to land.

If you have a spouse, family, friends, or strong community connections in which you have confidence and faith that you can turn to, knowing you are safe and secure in the world you share with them, please try to understand that you likely may not be able to fully comprehend exactly what it feels like for a person who has gone through such a deeply profound experience of rejection as to be cast out of one’s own community.

I do try to have faith, but faith is a tricky thing. Faith in God or faith in family or faith in friends. Faith that all will work out. Faith that some day acceptance and community will once again be a part of life. Faith that in the end, one’s life truly did matter…somehow to someone in some way.

Maybe if we were all as cute as Punch snuggling on his stuffed animal.

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Today, my second-born son, Declan, is now one day older than my first-born son, Brendan Bjørn.

Read that again and just let it sit with you. Feel it.

Today, my second-born son, Declan, is now one day older than my first-born son, Brendan Bjørn. 17 years, 7 months, and 18 days. One day older, one day more, than Brendan Bjørn ever got to live.

2026 will be a milestone year for Declan in many ways, not just in now being older than his older brother ever was. This year will see Declan finish secondary school (high school for my American friends). He will start third level education (again, for my American friends, that’s college). He will turn 18 years old in about four more months. And hopefully he will get his first part-time job once he finishes secondary school.

SO MANY milestones to look forward to for him this year!

For today, I will remember with love and cherish the fact that I was able to even have my two beautiful sons. I was 38 and 42 respectively and had five miscarriages along the way. To be clear, the soul-destroying pain of losing Brendan Bjørn in May of 2022 never leaves me, but I am trying to celebrate in my heart the pure immeasurable joy it was to see these two brothers grow together over the years. As I always say: Best Brothers Ever. And they were. From the first time they met in the hospital after Declan was born, to the first time Declan ever said “I love you” (which was to his brother), to the last breath his brother took while Declan held his hand and stood by his bedside.

Best Brothers Ever.

To you, Declan, my amazingly compassionate, sharp-witted, bright, artistic,
beautiful boy with the gorgeous long, curly ginger hair, I say this:

Make each day count * Remember what a blessing it is to have all you do in life * Never, ever forget your big brother and the love he shared with you; the lessons he taught you just by him being who he was * Slow down when needed * Go faster when needed * Learn the difference, because it isn’t always easy to know when to do which * Someday in the future, have children and create a family of your own. Trust me when I tell you that there is absolutely no love, no joy, like it * Give it time * Remember your past and let the good parts of it push you forward * Be open to finding God again, someday, when you’re ready * Know that you can change the world, even if it’s just in your small corner of this big messy world. That’s enough * Hold onto your family history with respect and remember that those who came before you are part of who you are today * Spend more time outdoors in nature * Be confident in who you are yet be willing to change if needed to be better * Smile * Laugh * Cry * Love * Be trustworthy * Be honest * Reach for your full potential * And lastly, never ever forget how much I love you, Declan. You are my shining light; my heart’s happiness. I am so very, very proud of you!

Cherish being one day older.

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It’s a strange thing to lose your sense of purpose in the world, especially at the hands of grief. For nearly 18 years my primary purpose was that of caring for my profoundly disabled son, Brendan Bjørn, as well as being a single mother to my younger son, Declan. When Brendan Bjørn died in 2022, I was left adrift in an ocean, holding onto the life raft that was my only surviving son as I searched for the shoreline to land upon; a shoreline that could be our port from the storm. Our future.

Three and a half years on and I’m more adrift now than before.

I’ve had a growing realisation over this past year, 2025, that…and how do I put this…I am no one’s priority. I say that not as a slight to anyone. It’s just the way it is. Years of isolation as a lone parent and 24/7 nursing-level carer lends itself to seeing old friends drop by the wayside and new friendships being terribly difficult to form, especially when living in a rural village.

I turned 60 years of age a couple of weeks ago. My heart’s desire would have been to have so many friends that they would have organised a big surprise party for this milestone birthday. Being realistic and knowing I don’t have that many friends, I decided to throw a party for myself. You know, be bold and brave and take the initiative. I invited old friends and new friends actually never met but with whom I had many great conversations on social media over recent years. The excitement built over the approaching months. I was finally reaching out, as many have suggested I do, with intent to form connections.

I invited 23 people estimating about only half would be able to attend due to some having to travel from other counties and, let’s face it, having a birthday just 12 days before Christmas sometimes doesn’t make it easy.

On the day, two people came:
One came from another country in Europe.
One came from the next county over.

If it wasn’t for these two wonderful people who took the time and effort to share that afternoon with me, I would have been at home with Declan once again celebrating (but not really celebrating) my 60th birthday. I can’t express the depth of my appreciation and joy felt at their sharing their time with me that day. It means so very, very much.

In the days leading up to my birthday, as more and more invitations were declined, it hit home how, in the loss of my sense of purpose, in that increasing isolation from being a carer for all those years, it has left me to be no one’s priority. I’m no one’s love or best friend. I don’t think I’m even considered among anyone’s top 5 closest friends, if there was to be such a list.

And that’s no one’s fault, not even mine.
It’s just the way life has gone.
I am no one’s priority.

Does that hurt? Yes, desperately so. And before anyone suggests counseling or just thinking positively, trust me when I say I’ve tried it all. (and I was going to a counselor for a time this year but can’t afford it any more.) As well, I have a Masters in Counseling. I know all the tools to use. I also know how difficult it can be when floating adrift on that ocean to search for purpose, for reason, for meaning, while waves of grief and depression try to knock loose your grip on the life raft.

Alas, here I sit, scribbling down my thoughts at 60. I contemplate how my mother died at 60 years of age. I ponder how many more years will I be blessed with as my own chronic health conditions challenge my days – challenges which keep me from being able to work full time and drastically limit my ability to find suitable part time work, resulting in me struggling to hold on financially.

I think if I knew that I had another 20 or 25 years to live this adventurous gift of life, I would likely be more encouraged to look ahead, to plan, and indeed to fight for future possibilities…

To allow myself to believe I could one day again become a priority to friends or family who would hold me as such in their heart.

It truly is a stark and lonely place to be, not being anyone’s priority in the world. I’m no one’s “number one person” anymore. Once upon a time, I was.

Twenty one years ago I was wheeled into the operating room for a scheduled Cesarean section. I was about to become a mother for the first time. I had four miscarriages previously and at 38 years of age, it was a lifetime’s dream about to come true. I was terrified at the prospect of such a major operation. That was indeed my greatest of worries. I wasn’t worried about the baby. All the scans and progress monitoring showed everything was just fine. On the contrary, I couldn’t wait to meet my son or daughter! I was absolutely bursting with excitement!

“It’s a boy!” the doctor said from beyond the blue curtain shielding my view.

And with those words, I had a son. A SON!! Tears flowed as I heard his first cries. Then the nurse brought him over to me, all swaddled and with a scowl on his chubby little face, and I gave him his very first kiss.

It would be the first kiss of daily kisses for 17 years, 7 months, and 17 days.

That is how long I was blessed to have him in my life.

Twenty one years ago today my son, Brendan Bjørn, was born. He scored a 9 on both his one and five minute APGAR scores. A perfectly healthy boy, they said. The next day they told me he was failing his newborn hearing screening in one ear but not to worry because it was likely amniotic fluid in the ear. They’d retest before we were discharged from the hospital in a couple of days. I didn’t worry. I just snuggled with this miracle baby. My beautiful boy, Brendan Bjørn.

By the time we left the hospital, he had again failed the hearing test in his right ear. They ordered an ABR test to be done in a couple of weeks. I really didn’t think too much of it at the time, and why would I? They said it would be fine. But by the end of October, our world had come crashing down. The ABR showed profound sensorineural hearing loss. His 2-week well baby check up uncovered that his head was too small. Microcephaly. That, combined with the deafness, led to further testing and a CT scan of his brain. The diagnosis: severe brain damage in utero caused by cytomegalovirus (CMV).

I don’t want this blog post to be about CMV, though. (you can learn more about CMV here)

I want to focus on him. Brendan Bjørn. Today, on is 21st birthday, I want to celebrate the pure goodness, love and light that he was. He was truly BEAUTIFUL. He had a smile that could light up the darkest of rooms. He didn’t have words but his eyes radiated his love and happiness. His laughter elevated the worst of moods. And he absolutely adored his younger brother! There was no bond like theirs. It was such a tremendous sight to behold.

Twenty one. A lifetime ago, but just yesterday.

I nearly think it would do a disservice to his memory to elaborate on how broken I am without him now. I am, but may today not be about that. May it be a celebration of who he was and of his birth 21 years ago.

Happy Heavenly birthday, my sweet, beautiful angel Brendan Bjørn.
Sending you “a million kisses ‘cuz I love you a million times”

Forever and always.

Today marks 10 years since I wrote my first blog piece. At the time, Brendan Bjørn was in the hospital…yet again. He was going in for a procedure the next day, so I titled the piece, The Night Before. As I read it again now, I’m brought to tears. I can feel everything that I was feeling as I wrote it. The memories still so present. The pain, the struggles, and yes, also the joy at being blessed by being his mother. And I was truly blessed by him.

He’s been gone now for 3 years and 3 months.
I’m not the same person I was before.
I’m still not sure who I am now.
I’m not sure what my purpose is anymore.

Recently in our disabled community here in Ireland, another beautiful little boy, Harvey, left his parents and family all too soon. Like my son, he too had scoliosis and other health concerns and waited inhumanely, suffering, on the spinal fusion/operation waitlist. And like my son, this beautiful little boy garnered the attention of the media as his parents fought tirelessly for the timely, proper, healthcare their son needed. Also like my son, while their son did eventually get his operation, the damage done during such a horrifically long wait while his twisting spine did untold irreparable damage internally, it was heartbreakingly too little, too late.

Ireland is rallying around and calling for things to change for our children with additional healthcare needs. I hope and pray it will finally be the moment for that change!

Harvey’s passing and the flurry of attention to it on social media the past few weeks has triggered my anxiety and PTSD. I mention this only to highlight the toll this journey can take on a person, especially a lone-parent, nursing-level carer of nearly 18 years. The anguish of all those years of fighting, struggling to keep Brendan Bjørn alive, to receive all the healthcare and services he needed – and deserved – comes rushing back to me in waves that nearly drown me emotionally at times. Looking through all of the photos in attempts to help support this media storm call to facilitate needed changes has been extremely difficult for me. I’ve tried to publicly share on social media, once again, Brendan Bjørn’s own scoliosis journey and the grave injustices that occurred along the way.

It’s been another toll taken, though.

As I write this blog piece on the 10 year mark since my first blog piece, I contemplate what I need to do now for my own well-being. I think it’s time to earnestly, diligently, work on finishing the book I started about our journey. I think it’s time for me to honour Brendan Bjørn in that way. This blog will undoubtedly be a part of the book, but I’m thinking I will be less active in writing here now. At least, that’s the plan as I try to navigate life as it is now, with new struggles not written about here, but which are nonetheless equally challenging for me.

So, on this 10 year blog anniversary, I’ll end it with the final paragraph of that first blog. I dedicate this piece to all of our angels gone too soon.

“But I tuck the covers around him as I sit here on this hospital bed, looking at him while attempting to clear the “somethings” out of the air so I can see him more clearly. And there he is….the most beautiful angel fast asleep without a care in the world. Suddenly, for that moment, all is calm and all that remains is everything – unconditional love.“

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It’s been 3 years since I lost my profoundly disabled son, Brendan Bjørn. For nearly 18 years, I was his full time, nursing-level carer to his complex medical and disability needs. I did this as a lone parent. I did this, during some of those early years, while working full time. I did this, some years, while working part time. Mostly, though, I didn’t work outside the home. His care needs were too demanding. They were indeed literally 24/7.

Three years on and I find myself in chronic pain with a number of health issues, the primary one of peripheral neuropathy which has yet to be addressed by anything other than a scrip of Gabapentin that has numerous side effects for me. I’m slowly weaning myself off of it and I’m trying like hell to find a doctor who will do more than hand me pills.

I want to be better.
I need to be better.

I’ve been looking for part time work that I can manage with my health issues. I’ve had no luck at all. Let’s face it, my CV is lacking when it comes to recent professional work experience, I’ll be 60 later this year, and I’m limited in what I can do physically now.

I think I’ve passed the Best Before Date.

It’s extremely difficult to not give up hope on having a fulfilling future when struggling to make ends meet; when being rejected for simple jobs; when not even getting a response to a CV submitted. It’s disheartening to think of the decades of study, the degrees earned, the professional works accomplished, when sitting in a darkened room so to keep the electricity bill from getting too high while selling various less-needed household items just to make those ends meet. It’s disappointing to be used as a full time, complex carer to support a crumbling, dysfunctional health service who provided so little help while I was a carer to my son and who have now, for all intensive purposes, discarded my own health needs. But here, take these pills.

It leaves me often pondering what it was all for, those years of work and study? Did I do any good in this world which will leave a legacy of positive contribution for the generations to come or was it all for naught? When it’s my time, will I just fade out of everyone’s memory, forgotten despite all of those years filled with passionate effort and living? I think about all of this probably far more often than I should. I’m nothing if not open and honest in this blog, though.

It leaves me, frankly put, feeling useless and left to sit quietly in this darkened room hoping to God this debilitating chronic pain will go away so I can once again have some hope for a happy, productive future.

I think I’ve passed the Best Before Date.
May I be wrong.

Today marks three years since I lost my first-born son, Brendan Bjørn. He was 17 years, 7 months and 17 days old. In less than an hour it will be the exact time he took his last breath at 7:44am. I held his right hand. His brother, Declan, held his left hand. The three of us alone in our individual life journeys, which were so intertwined they were one in the same, forming a circle of connectedness with our holding of hands.

Those last breaths. That last breath. The guttural wail which escaped my soul as there were no more breaths to be seen. The boy I gave life to, whose fragile and medically complex life I fought to save day in, day out, for all those years, was gone. Gone.

Some things are seared into a person’s memory like no other.

Some things are seared into a person’s soul, never to be healed.

I’m watching the clock as I type this, conscious of that time and well aware that time will arrive and depart and it won’t actually make a difference to anything. It’s just a marker. Like today. It’s just a marker. For I think of my son, Brendan Bjørn, every single day without fail. Today marks sadness, devastating loss, and truly indescribable pain. It also marks chaos and a change of trajectory in my life, and that of my other son, which I am still trying to figure out but it would seem of late, and apparently without much success.

Some things are seared into a person’s soul, never to be healed.

It’s now 7:11am. I’m not sure what I will do to mark the day. Later today there is bringing Declan to a friend’s birthday celebration. I think Brendan Bjørn would be happy to see his little brother smiling with friends. For me, I’m not sure what I’ll do. I’ll try to light a candle somewhere. I’ll look for beauty somewhere. And I’ll try to remember this is just a marker of a day, though it may often feel like the weight of the world. To be honest, pretty much every day lately has felt like the weight of the world is on my shoulders. But that’s another story for another day.

7:24am now. I’m going to stop watching the clock, finish typing, post this blog entry, and hold my breath until that time passes.

Some things are seared into a person’s soul, never to be healed.

three years.

Today, 18 March 2025, is the 35th anniversary of my mother’s passing. I sit here now wondering how can it be 35 years ago? But, it has been and not a year goes by that I don’t miss her and wish I could talk to her, hug her, and hear her laughter where her bright blue eyes would disappeared into the happiest of squinting slivers. She died 18 March 1990 when she was just 60 years old. I had turned 24 only a few months prior. It was far too young to lose a mother. As I look back now, contemplating how this is the year when I will turn her last age of 60, hindsight tells me just how right that statement is: 24 is far too young to lose a mother.

I try not to let myself think about dying as young as she did. I have a young son who is 6 years younger than I was at the time my mom died. As I continue to currently struggle with some health issues, I shudder thinking of leaving him behind and alone at such a tender age, God forbid. Honestly, it scares the crap out of me. I’m determined to not let that happen, to do all I can to improve my health where possible, but I also know life doesn’t always go how we hope.

Never mind for now.

Today I won’t focus on that dread. Instead, I will focus on who my mother was to me. Who she was as a woman. Who she was as my mom.

• She was a light in an often dark childhood.
• She was the person who taught me to be tender and loving.
• She was the mother who insisted I eat the lima beans in the mixed vegetables, something I never did, much to her dismay.
• She was the mother who trusted her youngest of 4 children, me, with carrying out her final wishes upon her passing.
• She was the mother who showed compassion when I asked her if what my paternal grandmother once told me was true, did she want to abort me? I had to ask her while I had the chance. No, she never thought or said that, she reassured me.
• She was the woman who fell in love with a married man and pined for him as their love was never going to go any further than an affair.
• She was the broken-hearted woman who would cry listening to her favourite song, Time in a Bottle by Jim Croce.
• She was the woman who struggled with alcohol, chain smoked cigarettes, and loved bacon.
• She was the mother who taught me to have good manners, who loved to dance in the living room, and who entrusted me with the safekeeping of the family photos and heirlooms.
• She was the woman who liked animals more than people. Her words.
• She was the mother who, now divorced from my father, left me, her youngest child of 8 years old, alone on my own too many times, with no dinner, no breakfast the next morning, no reassurance throughout frightened nights alone in an empty home, left to fend for myself.
• She was the mother who my father had me ‘spy’ on at 8 years old by writing down the times she came home, or should I say didn’t come home. He said it was for court. Talked of going before a judge as he and I sat one day on the steps leading up to my bedroom. Mind you, he made no effort to make sure I wasn’t left alone all those nights. Just spy on her. Take notes, Tracy, as he handed me a small notebook.
• She was the woman I loved – and still love – beyond measure. She was my mother. The woman who I watched crying as she stood on the front door steps of our family home as my father drove me away a year later, age 9, after filling me with promises of a better life which never really came to fruition.
• She was the voice I longed for on the other end of the phone for so many years of my childhood, moments that filled me with joy as I held the yellow phone typical of the mid-seventies to my ear, as she asked me when I could come visit.
• She was the woman that my father said I was just like, “a jezebel” he’d yell. I was about 10 or 11 years of age so of course had no idea what that word meant, I only knew it wasn’t good. Nothing good is ever said in drunken rages though, is it?
• She was the mother I returned to as soon as I was old enough and able upon hearing she was diagnosed with cancer.
• She was the woman who I joked with that her auburn hair fuzz growing back after months of radiation treatment reminded me of a kiwi fruit. I can still see her rolling her eyes at me, hear her saying both my first and middle name as if one name, all the while smiling at the humour of it. To this day when I see a kiwi I think of that moment and it makes me smile.
• She was the mother whose hand I held for the last years of her life as she battled cancer.
• She was the frail woman whose body slowly failed and faded away before my eyes, just as my first born son, not yet born, would do 32 years later.
• She was the woman who, with the sharp eye for a nice pair of muscular legs on a man (an eye which I did happen to inherit, truth be told) said to the young man bringing in her oxygen tank to her hospice bed two days before she died, what nice legs he had. And yes, she was right but I’m sure I blushed more than even he did!
• She was the gentle voice who softly said to me she wasn’t hungry as I tried to feed strawberry ice cream to her on what would turn out to be her last day. I’m not hungry, honey, I’m ok. I love you.
• She was the first dead body I ever touched (my son being the second), missing her passing away by mere minutes. I had to be sure in some grief-stricken level of disbelief, as I reached out and gently shook her shoulder with my trembling hand. She was gone. She was gone.
• She was a woman who was far more than my simple words could ever say. She was creative, kind, gentle, loving, fair, a fighter, a lover, and so much more. She instilled in me many positive qualities. She taught me how to be – and indeed how not to be – and for all of that, I am eternally grateful.

Despite it all, and maybe because of it all, to me,
she was the person I loved most in this world
until I myself finally became a mother 14 years after losing her.

To you mom, all of my love, always. I hope you’re keeping your beautiful grandson, my precious Brendan Bjørn, in loving company until it’s my time to join you both. But may that be a very long time from now.

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.