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.

Today marks 6 weeks since I helped lift my precious teenage son’s lifeless body into his coffin to be taken to the funeral home. I can still see and feel everything about that moment. What a horrific thing it is to see your own child in a coffin.

If you never have, I hope you never do.

6 weeks ago, I then stood at the front of the house watching as the hearse carrying my beloved boy pulled out of our drive. It’s surreal while simultaneously being devastatingly all too real. A crushing pain I will never forget.

If you have never felt this pain, I hope you never do.

The cruelty of such memories won’t go away. I want desperately to forget these memories. At times, they keep me awake at night, even after 6 weeks. They flash into my mind at random times during random days, as well. I know this is part of the grieving process…I know…I know.

6 weeks on and I am finding a few more moments of laughter, especially with my younger son, Declan, than I did even a week ago. How very blessed I am to have him as my son! He’s been my rock at times. He’s been the soft shoulder to cry on. He’s been – as he always has had to be on this special journey – advanced beyond his years. He misses his brother terribly and we talk freely about our feelings. We share the memories. We shed the tears when they come.

6 weeks on and I know that I must begin looking at our future.

I will never be whole again. I will never be the same person I was before losing Brendan Bjorn. But what I am now, and however much of me remains now, it is Declan who will be at the heart of all my decisions from this point forward. His needs, wants, dreams, and goals. What is best for him. Where is best for him. Everything will be for him.

6 weeks on and yes, I am still spinning. I am still lost. And I’ve lost so incredibly much that I know it will take quite some time to be able to simply refocus and stand up without falling flat on my face.

But I can now at least see that the dial on life’s compass points directly and solely at Declan.

I have to think that it’s Brendan Bjorn holding that compass now, and it’s him who will be keeping us on the right path as he watches over us every step of the way. The incredibly deep, special love the two of them shared is the true north on our compass.

May we always make Brendan Bjorn smile down on us in joy.

Seventeen years. Seven months. Seventeen days. That’s how long I worked providing nursing level care to my profoundly disabled son, Brendan Bjorn. Think about just how long that is and what a huge part of someone’s life that is. Then think about how incredibly difficult it is to try and transition into a life without that role, a role which was literally 24/7, always on call when not actually hands on, in just a matter of weeks.

Think about that for a minute. If that was you, how hard would it be for you?

Now add in the all too painful of a fact that this huge part of someone’s life doing this 24/7 nursing level caring work was for their very own child. A child they carried within their own body, gave birth to, and loved more than life itself. A child they would have given their own life to save, if only they could have. A child they fought so desperately for year after year after year. A child who was the centre of their world for so very long. 17 1/2 years long.

Think about that for a minute. If that was you, how would it make you feel?

It’s been 4 1/2 weeks of my life being turned upside down and my heart being ripped apart since losing my beautiful son. One thing I’m discovering is that people, although well-meaning, don’t really understand what this level of caring and this level of loss is like, unless they have been on this particular journey. This length of time, with the level of intensive care given, and it being one’s own child, is something I dare say most people can’t comprehend, even if they’ve experienced loss or been a carer for a few years. For example, I’ve lost both parents. I helped care for my mother when she got cancer and was dying. It doesn’t even compare, at least not for me.

Seventeen years. Seven months. Seventeen days. My beloved, precious child.

It’s been 4 1/2 weeks. How do I magically become OK enough to find paid employment after all of these years? How do I magically not burst into tears at a mere fleeting thought of those last minutes of his life as he gasped for air? How do I magically make my aching 56 year old body, which has taken a beating and been neglected all of these years of caring, be able to even go through the day without needing to lay down? How do I magically keep the anxiety and depression at bay so the horrific thoughts don’t come streaming in any unexpected moment of the day?

I don’t know how.

Full time, long term carers (let’s say over a dozen years to be long term) like me just can’t immediately pick up where we left off our lives before we became a carer, especially in the midst of such devastating grief.

I wish the world could walk in our shoes for a day and then maybe true understanding would occur. Maybe then, empathy would grow to the point of being followed by proper, longer term supports to help carers (I suppose I’m a former carer now) as they grieve such a devastating loss after having worked unpaid for so incredibly long.

I know I’m rambling. This is my mind lately. All I know is that I want him back. Brendan Bjorn.

It’s been 4 weeks today since I lost my beautiful Brendan Bjorn. I don’t know where the time has gone. The weeks have been lost in the fog that I find myself walking through most days.

Yesterday, they (HSE equipment stores) came to take away my son’s special medical bed, his custom wheelchair, and all his unused supplies. The pick up of the items had been postponed from last week. Maybe that’s the way it was meant to be, because as it turns out, I needed more time seeing those memories in a tangible way.

I had requested they come collect the items because I remember all too well the months on end Brendan Bjorn waited for each piece of special equipment. The man who came to collect the items had been here before to move Brendan Bjorn’s bed while home modifications were about to begin, and then he returned when they were completed. I was glad to see it was him drive up in the truck yesterday to collect those items I had just spent over an hour sobbing on.

I held the headrest of the wheelchair as I cried, visualising my precious boy sitting in it as he did countless times, laughing, eyes beaming with love, as he enjoyed being taken for a stroll amongst the trees.

I laid my head on his bed, right where he had last lay his head, and I sobbed. Uncontrollably so. That wave of grief took hold to the point I could barely breathe, coughing with my asthma triggered.

As the bed was being dismantled, the man from the HSE walked back into Brendan Bjorn’s room and found me staring at what remained of it. He came up to me and, looking me in the eye, and said, “They are just tools he used. They aren’t him, his spirit.” Then he told me a story about an old stubborn farmer who didn’t want to accept that he needed a medical bed. He refused it, the wife told him at the door. So, this wonderful HSE man had a chat with him, similar to what he had with me yesterday, explaining that the bed is just a tool to use, it isn’t the person.

And it made all the difference.
I’m so thankful it was he who came to collect those items.

Brendan Bjorn’s room is achingly empty now. I know at some point I will need to go through everything else. His clothes, the remaining medical supplies on his bedside table, the DVDs he so loved to watch. But now is not the time for that. I’m not ready. Yesterday was physically and emotionally taxing on me with all the heavy crying and I find myself in pain this morning.

This is another day on the path of grieving. The waves will come, and they will go. They come out of nowhere, and sometimes they leave just as quickly.

What will never leave is my indescribable love for my first born son, my Brendan Bjorn. My angel.

They don’t tell you…

They don’t tell you that just 2 weeks to the day, as today is, the pain is often more intense than the days immediately following.

They don’t tell you that you may be afraid to go into the room where your beloved died.

They don’t tell you that when you do finally brave going into the room to collect any medications to be returned to the pharmacy, seeing those medications which helped your beloved at the end of their life will send you into a complete emotional breakdown with uncontrollable sobbing.

They don’t tell you that as you pack the boxes and the bags full of unused, now unneeded, medications which kept your beloved healthy and alive as best they could, while tears stream down your face, will leave you with yet another layer of emptiness…as empty as the cupboards now stand.

They don’t tell you that spending nearly 18 years working, fighting, sacrificing all you are and doing all you could to keep your medically complex, profoundly disabled child alive, will mean absolutely nothing to the officials within your country as they throw you into the depths of financial despair while you’re drowning in the depths of complete emotional despair.

They don’t tell you that most bereavement literature is not geared toward your particular journey…that of being a parent to a profoundly disabled and/or medically complex child…and so the reading leaves you feeling just as misunderstood and unheard as the previous years of such a special journey had done.

They don’t tell you that the horrific images of the last days will come racing through your mind, invading the fleeting moments of rest, catapulting you into anxiety attacks as you work to rid the thoughts of the end from your weary mind.

They don’t tell you that after nearly 18 years of being a carer, you can’t even begin to comprehend how to be anything else again. Certainly not after just 2 weeks.

They don’t tell you how to now survive.

My dearest son Brendan Bjorn,

I love you. With every shattered bit of my broken heart that remains, I love you. And I miss you. Oh, how I miss you!!! Your smile that lit up the room, your eyes which left no doubt they were saying just how much you loved me each time you gazed up at me or your brother, your laughter coming from down the hallway as you watched one of your favourite films. I miss it all.

The 10 days since you passed on have been as if time has stood still. Surreal. I can’t believe it’s been only 10 days, but then again, it seems only yesterday. Time has no logical flow right now. My head is spinning. My body is literally exhausted and aching. And my heart, well, what is left of it is screaming out for you to be here; for this to be a bad dream from which I can and will awake.

But I know it isn’t. God, how I know it isn’t.

Only 7 days ago today at this very time while I write this to you, your brother and I were at the funeral home preparing for the celebration of life we planned for you. I know you were there and you saw it all, for it was surely you who got me through those few days and the service. It was you who stood in spirit next to your brother as he found the words to thank you for your love and all you gave to us.

Thank you, for so many things, thank you.

I managed to go for a long walk today. You were on my mind the entire time. I saw you in the beauty of the wildflowers all along the roadside. I heard you in the birdsong. I felt you in the breeze. But still, the tears fell down my face as my longing to reach out and touch you unfairly can’t be met. The pain is indescribable. I think if it wasn’t for your brother, the pain would carry me away. It won’t, though, as he needs me now unlike ever before. My life now must be completely centred around him, as I know you would want it to be.

A friend who lost her disabled teenage son nearly 5 years ago said this to me:

“For us whose world literally revolves around our heroes, whose lives were literally intermingled, the “lost” feelings are almost unexplainable. We don’t know how to live any other way. Now the identity journey (similar to the one you probably had when his disabilities were discovered) literally spirals you.”

My sweet Brendan Bjorn, I am lost without you, spiralling, but I know I must not be lost. For Declan, I must not be.

What is lost within me is the identity my friend so accurately spoke of, and now I must somehow learn how to discover, once again, who I am as a person. After nearly 18 years, I am no longer a carer to a profoundly disabled son. I am no longer an advocate fighting for the rights of other carers as well as myself; no longer fighting for the rights of other disabled children as well as my own son. Just as when I became a full time carer to you, my precious, beautiful son, and I lost my long-worked for career, I now again have to find a new identity. I have to find myself in a world not devoted literally 24/7 around you.

This time, though, I have to attempt to find myself while also trying to not drown in the darkest depths of my grief. This time, though, I have lost you. And I have lost so very much of me. I have lost purpose and direction and, hell, I’ve even lost the income which kept our little family afloat. So much loss. So much loss.

Guide me, please, in the time ahead, my precious Brendan Bjorn.
Watch over me and your beloved little brother.

I love you, baby. With every shattered bit of my broken heart that remains, I love you.

Video celebrating the life of Brendan Bjorn, my beautiful angel son

I’m sitting here alone watching the clock. It’s about to turn 7:44am. It will mark exactly one week since my beautiful first born son, Brendan Bjorn, took his last breath while his brother, Declan, and I held his hands.

7:41am

I don’t know if I can do this. Do anything. Right now, breathing is at times all I can find the energy to do. I haven’t even cried in a few days…not out of lack of emotion, but I think because the emotions are overwhelming me.

7:42am

This time last week the tears were streaming down my face as I stroked my boy’s lovely, thick brown hair and told him it was ok, that we were right here, that he could let go.

7:43am

Forget what I said above. After days of not crying, I am now crying as I type this blog piece. And remember.

7:44am

8:03am

Sobbed uncontrollably to the point of not being able to catch my breath and triggering my asthma. Inhaler taken now. Talking myself into a space of calming down because, well, I have to do it. I have to think of Declan. I’m all he has now and I can’t lose myself altogether. Yesterday was his 14th birthday. He needs me here. And God knows, I need him.

Declan is back at school today after having taken the last week and a half off. He’s been so mature through this heartbreak. He spoke so well at Brendan Bjorn’s celebration of life (funeral). We have moments of crying together, and even some moments of laughter. But this past week, it’s mostly been quiet. Solemn. Reflective. Still.

Life with Brendan Bjorn is ALL that Declan has ever known.
His world has been shaken as much as mine.
He is now my main priority in life: to get him settled for his life ahead as a young man in this world.

I’ve had a lot of time to think of what I would do when this day came where my caring role was over. Yet now that this day has come, I feel more lost than I thought I would. The day after Brendan Bjorn’s celebration of life, I could barely move. I was physically drained. I didn’t realise that I had gotten through the week and the service on what must have been reserves, because I woke the next morning with nothing left. I am still physically weak, exhausted, shaking.

Emotionally, I wrestle with thoughts of doubting myself…did I do enough; did I try everything; could I have done more…despite all of Brendan Bjorn’s doctors and nurses telling me I did all that I could and indeed more than many parents would do or have done. Still, I wrestle with those thoughts of questioning myself. Mind you, having someone call the police after my last blog piece, accusing me of starving my precious son to death, resulting in 3 Gardai coming into my home and questioning me, hasn’t helped my instinctual self-doubts. In fact, that evening continues to traumatise me, playing over in my mind and even invading my dreams. And to think Declan saw it all. My heart aches for all he’s been through.

8:16am

The tears have settled again, undoubtedly until next time they come raging. Today I will go to the GP and pick up the medical death certificate for Brendan Bjorn. The GP office rang yesterday to tell me it was ready while I was at the beach with Declan for his birthday. We tried to escape the reality, but it barged in on us with that phone call.

At some point this week, since I will now have the certificate, I will have to register his death and notify social welfare. That will be Declan and I floating adrift financially in now just 5 weeks time. How is someone supposed to pick themselves up after nearly 18 years of intensive, nursing-level, complex medical caring work, literally 24/7, and even contemplate rejoining the workforce? My body is broken after years of this work. My health not good. My career gone. My heart shattered. I’ll be 57 later this year and all I want to do now is rest. At this moment, I actually want to go back to bed but I know I can’t. Too much to get done. There is no one else to do it all.

8:23am

I just want him back.

Today I did the hardest thing I’ve ever done to date. I went to a funeral home to pre-plan Brendan Bjorn’s funeral. I thought doing that for my mother when I was just 24 was hard, but it pales in comparison to what I did today. My first born child. My precious, beautiful, beloved son.

For the last time, I had his devoted brother watch over Brendan Bjorn while I left him.

For the last time, I made plans about Brendan Bjorn’s future.

And I think my soul is being torn to bits.

Talk of arrangements…what to do, when to do it, how to do it.

Flowers and a casket.

Private or public repose, if any at all. Day before or same day.

Streaming the service, or not, for those unable to attend.

My head spins.
My stomach with an awful pain the past two days.
My hands trembling for the past few weeks.

Costs. I ask about costs.

For the last time, I ask about how much something will cost for Brendan Bjorn.

For the last time, I reluctantly resort to asking for help to cover those costs.

For the last time, the humiliation at doing so rises within me as I do just that, one last time, for my Brendan Bjorn.

Via GoFundMe at: https://www.gofundme.com/f/funeral-costs-for-brendan-bjorn

Or via PayPal at: https://www.paypal.com/paypalme/4BrendanBjorn

And I now know my soul is being torn to bits.