I just want him back

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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

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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

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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

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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

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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.

because I just don’t know

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I don’t know what else to do but write. So, here I am. I will write to release these parts of my heart that are breaking.

The past few days, Brendan Bjorn has been extremely unwell. His feeding intolerance (gut absorption issue) has suddenly taken a quick turn. He’s barely tolerating Dioralyte, let alone any formula. He’s becoming dehydrated. I’m attempting to increase the rate of Dioralyte, per the Paediatrician’s instructions. He’s been grinding his teeth all morning. That’s his way of telling me he is uncomfortable or hurting which means the increase isn’t being taken easily.

I gave him a bed bath.
I wondered if it was the last one I’d ever give him.
I gave him a shave this morning.
I wondered if it was the last one I’d ever give him.
I trimmed his nails this morning.
I wondered if it was the last time I’d ever do that for him.

He smiled at me first thing this morning.
It was the first smile I’ve seen in three days.
He hasn’t smiled again today, not even as he always does during a bed bath.
And now I wonder if that was the last smile he’d ever give me.

I want to scream right off of this page: DO YOU UNDERSTAND HOW THIS FEELS?!

He’s not ill. He’s palliative. He’s declining.
I think he’s dying.
Slowly or quickly, I don’t know. I can’t know. I don’t think I want to know. I just don’t know. All I know is that my heart is being torn to shreds as I watch this, helplessly, and alone. I feel like I can’t breathe. I feel like I’m fighting an invisible foe a hundred times my size. Sometimes I can’t stop sobbing. Other times I’m completely numb.

Maybe, just maybe, he’ll come through this.
Maybe this isn’t THAT time.
Maybe, just maybe, but then why isn’t the light that is always beaming from his eyes there now? I can only catch glimpses of it, like when he smiled at me this morning. For nearly 18 years I’ve lived for that pure, radiating, beautiful light.

What will I do if that light goes out?

Brendan Bjorn, 7 April 2022

What will it take?

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This morning, I’m asking myself: What will it take for people to actively get behind and support the fight for equality, human rights and needed services for profoundly disabled people and their families?

I spend far too much time on Twitter advocating.

I spend far too much time writing emails to change the system.

I spend far too much time sitting alone dwelling on the precious years of my adult working life which are never to be retrieved.

I spend far too much time worrying about how I will survive financially into the future as I near enter my late 50s.

And I spend far too much time trying to figure out what it will take for people – yes you, the person reading this blog piece – to actively, and I mean ACTIVELY, get behind and support the fight for equality, human rights and needed services for profoundly disabled people and their families.

So, I ask you, what will it take?

Do I and other families need to put out videos showing the struggles, the “ugly and raw” aspects of our daily lives so to make your heart ache as ours do?

Do we need to stop showing only the smiling, cute, or heartwarming photos of our profoundly disabled child / adult child, instead showing you the reality of what we see more often than not?

Do we need to have our advocacy work be more appealing, more “fashionable”, for the public to take it on board as they do other trendy causes which actually don’t even relate to their own person lives, just as profound disability probably doesn’t either?

What will it take?

I can only dream of a massive public response where people take to the streets in droves like they’ve done for Marriage Equality or in support of Ukraine or the Yes campaign.

Where are you all now?

Ask yourself if you’re doing enough to help. And then remind yourself of this fact:

Disability is the world’s largest minority group,
and the only one that any of us can become a member of at any time.

Think about that, please, and then help us fight for what our profoundly disabled loved ones, and ourselves, need to support their very challenging lives.

A Poem: a good mother

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a good mother doesn’t complain
about changing nappies
near 18 years
and counting
the boy is now a man

a good mother doesn’t mind
the chronic pain
her aging back
compressing over time

a good mother doesn’t dream
of life before
the caring
year after year, alone

a good mother doesn’t scream
but into the abyss
no one
to listen nearby

a good mother doesn’t fight
systems that destroy
life precious
ignoring pleas for help

a good mother doesn’t grieve
before her child dies
palliative now
she must only be strong
only be strong

a good mother doesn’t hope
for life after death
not her own
but her child’s
lest guilt overwhelm

a good mother doesn’t cry
in front of anyone
doors closed
for no one to see
but the reflection in the mirror

a good mother doesn’t believe
she deserves better
no support nor boost
to continue her own
once important life’s goals

a good mother doesn’t want
for more than she has
ungratefulness
is what that would be

a good mother doesn’t need
rest, comfort or friends
isolation
to be handled by such a saint

a good mother doesn’t care
for herself
selfless
she is the image
of the ideal mother

a good mother I am not
for I complain and I mind and I dream
for I scream and I fight and I grieve
for I hope and I cry and I believe
for I need
for I care

all I do is care.

(written by Tracy McGinnis, 18 March 2022)

Brendan Bjorn


Why I do what I do; Why I say what I say

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I put out an advocacy tweet this morning calling for more financial support for family carers as prices for everything from fuel to electricity to groceries to auto insurance are increasing rapidly. Everything BUT the meagre social welfare we receive is going up, that is. And I know I’m not the only carer out there who is beginning to sink financially.

  • The heat goes on less.
  • I don’t drive hardly anywhere when I get the rare chance, despite at times I’m desperate to do so.
  • I sit in a more dimly lit room than I would like.
  • After I get the numerous medical appointments for myself done, I will need to cancel my private health insurance because I simply can’t afford it anymore.
  • And recently, I’ve begun listing various items for sale online.

I hate being on welfare. I was raised to be independent, to work hard and to be self-sufficient. I didn’t put myself through University and then through Graduate School, studying while working full time, for many years just so I could lose everything that I worked so hard to secure, only to become dependent on a system which views me as less-than. It is humiliating and infuriating, in equal measure.

I also hate being a full time carer expected to live on crumbs as if the work I do around the clock isn’t worthy of fair pay…you know, an actual salary, complete with a pension accruing, so that when the day comes that I am no longer a carer, I don’t have to depend any more on the social welfare system. Doesn’t that seem logical? Surely the government doesn’t want to perpetuate poverty and dependency?

In my thoughts today after I made the above tweet, I began really contemplating all that I do, and in that of course comes my son’s numerous conditions. So, I made a list. You’ll see it below. Keep in mind, I do this alone, as a lone parent carer, around the clock. Not only am I sinking financially, but after nearly 18 years, my body is now in chronic pain. Arthritis in my major joints, Rheumatoid Arthritis, Degenerative discs, and most recently diagnosed with Asthma.

But hear me: I do NOT want pity.

What I want is for the powers at be to read this blog, then read below the medical conditions of my beloved son, Brendan Bjorn. Tell me honestly, could any of you do what I do 24/7?
Could you? Would you?

It is way past time that family carers of profoundly disabled children / adult children are treated fairly, equally, and provided with full, proper supports and remuneration.

When that happens, then I will finally be quiet.

A different kind of waiting and watching

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In the first years of Brendan Bjorn’s life, I waited for each milestone to be reached. I watched intently for signs that he could indeed possibly reach them. Most often, I waited and watched in vain, as the damage to his brain caused by the common virus CMV (cytomegalovirus) would betray that potential time and time again.

He never reached most developmental milestones, nor will he ever.

I will never forget Brendan Bjorn at his strongest. The days he could propel himself – albeit with great struggle – across the floor in a walker. The days he could reach out for an object, ever so slowly as his body fought against itself, and gently grasp the object with his hand. The days he could stand in a piece of disability equipment aptly called a stander.

What a sight it was to see him standing upright for the very first time! He was two years old. By the time he was nine years old, he could no longer use a stander. His hips with their multiple surgeries, his decreasing circulation to his extremities, and his worsening scoliosis, made it a painful experience for him.

And so, he never stood upright again. Nine years of age.

Today, I wait and watch in a much different way.

The past nearly 18 years of fighting for new developmental milestones to be reached is long over. The back-breaking nursing level care I provide around the clock to keep him alive for as long as I could, has come to an end. It is still the back-breaking nursing level care around the clock, but it is no longer to keep him alive for as long as I can. It is to keep him as comfortable as I can and to keep him from any form of suffering or pain or unhappiness.

What I would like people not on this journey to understand is that I am losing part of my heart, ever so slowly over the last number of years, as my first born son’s time on this earth inevitably winds down, and it is tearing my heart into absolute shreds.

Waiting and watching for someone you love more than life itself, someone who you actually brought into this world, to die is like no other pain imaginable.

I always knew that all of my efforts, all of these years, would only delay what was to come: That my precious son would die. I knew that. I suppose in the unconscious self-protection of the mind, I spent many years not so focused upon that cruel fact. But lately, it is on my mind and in my heart every single waking moment I have…and even sometimes in my dreams while I sleep…and at times I literally can’t breathe at the thought of it all. This isn’t the natural order of things. A child should outlive his parent.

How devastating nature can be to think that a common virus contracted while pregnant, likely while I worked as a therapist to help young children, should ultimately be what takes my own beautiful child away from me.

To my friends and family, and to those of the other parents going through this journey with a child who has a life-limited condition, I ask you to please, please be gentle as our hearts break; be patient as we find it hard to be positive in all we say or do; be there, even if it’s in silence, just providing arms of comfort to hold us when we collapse.

Brendan Bjorn in his first stander. Two years old. December 2006.