6 weeks

Standard

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.

I don’t know how

Standard

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.

4 weeks on and an empty room

Standard

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

Standard

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.

A love letter to my angel son

Standard

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 just want him back

Standard

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.

for the last time

Standard

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.

What will I do when I can no longer hold his hand?

and cruelly watch

Standard

9am Friday. I sit down now to try and settle my nerves by writing. I’ve just thrown up, I was crying so hard in the shower. A shower I took after tending to Brendan Bjorn’s first medication of the day, him in clear discomfort with bile coming from his PEG when I vented it for built up air in his stomach.

This is my reality. Raw as it may sound.

While in the shower my mind went to the all too inevitable funeral service at some unknown point in the likely very near future. Yes, it’s all so hour by hour, day by day. My thoughts were focused on my younger son, Declan, and how he’s only known a life with his big brother in it. What will I say to him at the funeral service, because the service will in many ways be equally about Declan as it is about Brendan Bjorn. It can’t not be. Their lives are inextricably linked. A bond like no other. And that’s what started the uncontrollable sobbing which led to me throwing up.

Tomorrow Declan and I have planned to take Brendan Bjorn out for a drive. He loves to go on drives. We will take him out for a stroll, preferably somewhere with a lot of trees. He LOVES trees. And, we have planned to take a lot of photos, knowing that this may be the last time we get the chance to take our beloved son and brother out of the house for such an adventure.

I can’t breathe.

Just typing that has sent me sobbing again.

This is a pain like no other. A mother losing their child, especially a child they have fought day in and day out, for nearly 18 years, to literally keep alive. It is unbearable.

But, I have to bear it. I just have to.

I spoke again yesterday to the GP. She spoke to the GI consultant. What now follows, in the days to come, is knowing that Brendan Bjorn can no longer tolerate the amount of formula he needs to sustain him. Keep him hydrated. Keep him as comfortable as possible (I have pain meds for him).

And wait. Wait while his fragile body slowly weakens and gives up.

And cruelly watch.

The first time I held my precious son, Brendan Bjorn

There is nothing more I can do to stop his fragile body from failing his indomitable spirit

Standard

I didn’t get to become a mother until two months before my 39th birthday. On the day Brendan Bjorn was born, I knew my world had changed forever. No, I didn’t have any idea he had severe brain damage and would take me on this journey of life with a profoundly disabled child. The doctors didn’t know, either. All of that would cruelly unfold in the weeks to follow. But on that day, that blessed day, I finally – after four miscarriages – got to hold a child of my own in my arms. There he was.

My son.
Brendan Bjorn.

I sit here now, 17 and a half years later, watching his tired body slowly give up its heroic fight to stay with me for as long as possible. There is nothing more I can do to stop his fragile body from failing his indomitable spirit. Everything has been tried. The last ditch effort of a new medication started last week didn’t help, and in fact, he had adverse reactions to it. So today, I stopped the medication after speaking to the GP. She agreed.

There is nothing more I can do.

Those words have be ringing in my head all day today. I’ve lost my breath at times when I think about what they really mean. Panic has set in. Thoughts racing of what I want to do with my beautiful son while I still can. What would he like. What would Declan want. What, how, when, and why…oh why, I cry.

No answer comes, of course.

Strange, random thoughts come to mind. Fingerprints. Get his finger or toe prints so you can have one of those memorial necklaces made. I tried. Ink everywhere. I discovered he doesn’t have very pronounced fingerprints and I’m not sure what I got will work. Then I sat down, bawling my eyes out, realising that not only may I not be able to have that memorial keepsake become a reality, but also for the simple fact that I even thought of it.

I’m exhausted physically, spiritually, emotionally, mentally.

On that note, last week, one of the managers on his disability team actually suggested I send Brendan Bjorn into school this week so I can “get a few hours of respite.” I have thought a lot today about that callous, ignorant suggestion as I listen to my son cough, gag, moan, unable to tolerate his PEG formula feed and now just on Dioralyte, which even that is causing difficulties for him. Even I, in my exhausted state, can see how that suggestion screams out just how little support and understanding there has been, and even now in this palliative time continues to be.

So here I sit, pondering the days to come.

I want to turn the clock back and have more time with him.
I want to be able to hold him in my arms like I did when he was little.
I want to go to bed not terrified he’ll be gone when I wake up.
I want to somehow magically make all of this not happen as it is bound to do.
And I want to shelter my youngest son from what he’s about to go through in losing his only sibling.

My heart is heavier today than I think it has ever been. I now know that this is what it feels like when there is no more hope. There will be no healing; no coming back from this struggle. This is Brendan Bjorn’s final struggle.

I can now only hope that I have been worthy of him all of these years, and will be so in the days ahead.

Brendan Bjorn in his bedroom, watching his favourite film

I am not superhuman

Standard

15 April 2022.

105 days since I last had a day/night off work.

84 days until my next day/night off work.

Work = nursing level, Palliative Care, profound disability & medically complex care, 24/7, alone, which has kept “the patient” out of hospital.

It shouldn’t matter that “the patient” is my son, but it does. Or at least it does to disability services and the healthcare system. But because he’s my son, I somehow am transformed from a mere human into a superhuman who can provide the same level of care work that 2 or 3 professionally trained nurses, doctors, and healthcare assistants, all working together, provide – all while rotating working shifts around the clock so they can rest, not to mention have a life outside of work. (But I’m not supposed to mention that as a carer, am I?)

I am not superhuman.

My son, Brendan Bjorn, has been very unwell the past couple of weeks. His gut refused his PEG formula feeds…again…and he went 8 days with only electrolyte fluids via PEG. It’s been hell, for him and for me, if I’m to be quite honest. I am exhausted.

The GP has come and gone.
The Palliative Care Doctor and Nurse have come and gone.

I remain.

I remain to continue on trying to work “the plan” to slowly reintroduce formula feeds via PEG to my son’s very fragile body, while also trying to keep him hydrated with electrolyte fluids via PEG when he isn’t on the formula feeds.

It’s been asked if I have been offered any help. The answer: a few months ago, I was offered 12 hours of in-home nursing help per week. I refused for a number of reasons, one of which is the high covid rate in the community. The other is that I need to be able to relax in my own home, as does my other son who has a neurodiversity, but it seems to be a fact no one in any service seems to care about. Neither of us can relax well with 2 strangers in our home (2 staff are required at one time to care for my son, a nurse and a healthcare assistant), all the noises of caring work happening and no way to escape it other than leave our own home, no matter that we may not want to leave.

Stop trying to pound a square peg into a round hole.

I’ve asked…pleaded…repeatedly for residential respite. There is none suitable in County Wexford. There are some within an hour’s drive, but those places have refused on grounds that either they are outside of our county, our CHO, or they don’t have any spaces available. Anything further out is too far a drive for Brendan Bjorn: he is too fragile. So, Brendan Bjorn’s last residential respite will be in July at LauraLynn Children’s Hospice. As he turns 18 later this year, he loses their service then. It will be his last stay there.

I’m tired of so many things.

I’m tired of fighting for the person-centred, individualised, help that my son and my family as a whole need. What works for one family does NOT work for all families.

I’m tired of having to explain to people how my anxiety and my other son’s neurodiversity concerns preclude us from finding in-home nursing as a viable option. It would only add more stress for us both. Why isn’t that accepted as the truth that it is? And anyway, 12 hours out of 168 hours of work (on my part) is not worth that added stress.

I’m tired of being angry, hopeless, exhausted, lonely, shaking, in pain, worried, filled with anxiety, overeating and overweight just trying to soothe myself from all that I’m so tired about in the first place.

I’m tired of not having the safety net of family and close friends that I know, without a shadow of a doubt, would always be there if I fall.

I’m tired of not wanting the life I’ve been forced to lead for so many years now.

I want a life that I want to lead.

I am not superhuman.