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.

What it takes to keep going

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I wake most mornings lately with my hands shaking. This morning, I woke to the 6:30am alarm amidst a nightmare. You know, the kind where it takes a minute to wake up enough to realise it isn’t real.

I wake most mornings still tired, back aching, shoulder hurting, and as of late, coughing (thanks a lot, newly-diagnosed asthma).

I wake wondering how I will find my eldest son, Brendan Bjorn. Will he have vomited in the middle of the night again and I didn’t hear him? Will he have petechiae covering his face from fighting to clear his own airway again? Will he be alive?

Yes, I wonder that last question every morning. Can you imagine how that feels?

I ask myself daily what more can I do to help him. Am I doing enough? What can I do better? What else can I do?

I ask myself a lot of questions, and as the last few years have passed and things have only become harder, I ask even more questions.

I wrote in my last piece about the stress I’m under; about what it’s like to live with anxiety. I think that part of being a long-term carer of someone with very complex medical and physical disability care needs goes ignored far too often.

My anxiety isn’t solely about my son’s condition and his care needs. It is also my own health and life. Some of those mornings when I wake up shaking, I wonder what I will find when I look in the mirror. Will I see the woman approaching 57, or will I see the excited, younger woman inside of me who still has hopes of a future which could hold promises of dreams yet to come true for her?

Brendan Bjorn is palliative. He’s sleeping more hours than he’s awake lately. His decline in health doesn’t just affect him. It affects his brother. It affects me. It impacts our entire family dynamic and our future, as well as our present day.

What will happen?
When will it happen?
What will we do when that day comes?
How many years do I myself realistically have left to live and what can I do with them?
Will I be capable of doing what I need to do?
Will I be capable, able, of doing what I want to do?

I don’t think most people, and certainly not politicians, realise just how HARD being a full-time, long-term, carer is on a person, let alone on the family as a whole. Without the proper wrap-around supports, it can be devastating…and so it has been.

Brendan Bjorn’s daily medications and just some of his care supplies
(the pills get reconstituted with water and delivered via syringe)

Finding the right thing to do

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“Just because something can be done, doesn’t mean it should be done or that it’s the right thing to do.”

I heard these wise words earlier this week from one of Brendan Bjorn’s new adult consultants. These words speak to our current truth; our current path on his journey which is also our collective journey considering the last 18 years of my life have been centred around, dictated by and dedicated to his care needs. His part of this journey is winding down. It’s something I always knew would happen. In fact, doctors had long thought he wouldn’t have made it this far.

But just because you know something would happen, it doesn’t necessarily make it easier to accept. This is hard. Very hard.

He’s growing tired. When he comes home from school, he now falls asleep within an hour of arriving home and will sleep for hours. He wakes only for about an hour before he’s back asleep for the night.

His pressure sores have returned, requiring more time side-lying in his bed or at school.

His body isn’t absorbing his formula feeds as it should and he’s now fed at such a slow rate he likely isn’t getting what he requires.

Somedays, one foot or hand will be roasting hot and the other one is ice cold.

He needs vented manually from his PEG (G-button) regularly throughout the day now, despite having a Ferrell Valve Bag in place. Usually venting is enough to relieve the pressure of air built up, but when it isn’t, he gags and vomits, sometimes choking. Keeping his airway clear has never been more important, or more difficult.

He will now go to school just 3 days per week, with a day of rest between.
There will be no more invasive procedures.
No rescue resuscitations.
Life now is about comfort and happiness and laughter and showering him with love.

This is palliative care.

I have been struggling with my own health and was just diagnosed with adult-onset asthma. That’s on top of having an auto-immune disease and other health issues. I’ve been open publicly about depression and anxiety in hopes of raising awareness for carers like me and the challenges we face. So on that note, I’ll say now how my anxiety has increased in recent months. I catch myself grinding my teeth throughout the day. My right temporomandibular joint actually makes a clicking sound now when I chew. I frequently find I’m trembling, hands shaking. Emotionally, I go from feeling numb to deeply saddened, depending on the day. I’ve been on an anti-depressant/anxiety medication for a number of years. I think life as it is recently happens to be overriding that medication.

I’ve been fighting since last year for residential respite for Brendan Bjorn, especially as he transitions from child to adult services upon turning 18 later this year…assuming he does, of course. There are none available that are suitable for his highly complex level of care needs. Well, scratch that. There ARE some available, they just won’t accept him because of being in a different county (even less than an hour away) or a different CHO area (Community Health Organisation area).

I have to ask: How is this even remotely acceptable?

I’ve been offered 12 hours of in-home nursing per week. It was again put to me yesterday during an online meeting with his Multi-Disciplinary disability team.

This is where I circle back to anxiety. What I need is not for 2 nurses to come into my home once or twice a week (however that 12 hours a week would be divided or taken in one shift), especially during a pandemic. What I need is for Brendan Bjorn to have respite out of the home, in a residential setting. My anxiety would only increase having 2 other people in the home (he requires a nurse and a health care assistant together to care for him) yet no matter how many times I tell the team this is a big part of why (there are other reasons, too) that I am refusing the (mere) 12 hours per week, they continue to push me to take it.

Why don’t they listen?

Not only am I a (former) mental health professional, so I understand anxiety and its triggers, I am also very self-aware. Considering the repeated failings within the HSE in Ireland regarding mental health care and the understanding of it, I’m frankly not surprised at the response – or lack thereof – which I am receiving.

I titled this blog piece as Finding the right thing to do. It applies not just to Brendan Bjorn’s care, but also to my self-care. I know what kind of respite will best help support my needs as his sole carer: a carer who alone is doing the complex nursing-level care work 24/7 which in any other setting requires two people to perform. I also know what kind of respite will actually not help.

As I’ve taken the time to ponder the quote from the consultant, I find it applies to me, too. If only others involved in Brendan Bjorn’s care, and thus having the ability to help support my little family as we go through this palliative stage, could also see this point of truth:

“Just because something can be done, doesn’t mean it should be done or that it’s the right thing to do.”

fast asleep after school, snugging with Mr. Bear

18 years ago today

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The tears streamed down my face. There were 2 lines on the white plastic test stick I held in my hand. I was pregnant. The tears were of sheer joy, but after 4 miscarriages, they were also tears of recognition that this could end in heartbreak.

18 years later, I now look back knowing that, on that joyous day, I had no idea what kind of journey and heartbreak could…would…lie ahead of me.

The pregnancy was rough at times, getting ill during the first trimester with what the doctor said was bronchitis, but with each ultrasound and each hearing of his little heart beating at speed, I grew more at ease that this time I would become a mother. And so I did. On the first day of October, my perfectly healthy son, who I called Brendan Bjorn, was born. 7 pound and 11 ounces, he was a dream come true.

He failed his new born hearing screening in one ear before we even left the hospital, but it was written off to likely being water in his ear. Subsequent testing showed it was in fact sensorineural hearing loss and it was profound. He was deaf in one ear. I remember being devastated that my beautiful baby boy, just 2 weeks old, was found to be deaf in one ear.

If only that was the extent of it.

At the 2 week well-baby check up, the paediatrician found that Brendan Bjorn’s head was in the 10th percentile. The rest of his body was in the 90th to 95th percentile. A big difference. That was the day I first heard the words microcephaly and cytomegalovirus (CMV). He had microcephaly (small brain/head), I was told, and in conjunction with sensorineural hearing loss, it could be one of four things that caused these issues. This is when I first heard about CMV.

Tests were ordered.
Blood drawn.
Urine samples taken.
It was the beginning of him being poked and tested and made to cry out in pain.

The bronchitis I had in the first trimester was likely a CMV infection. I was working as a Child and Family Therapist at the time in a public mental health clinic. I spent all day, everyday, working closely with children as young as 3 years of age. We even used the same toilet. CMV, a very common virus for which there is no vaccine, is most often contracted by pregnant women via young children.

I didn’t know. No one warned me about this virus…this insidious virus which is one of the leading causes of childhood disability in the world. This virus which disables more children each year than does Down Syndrome or Spina Bifida or Foetal Alcohol Syndrome.

Yet, there it was at just one month old, a diagnosis of congenital (born with) CMV.
My perfectly healthy son was actually not perfectly healthy.

18 years to the day since I still had such wonderful dreams of a glorious life for my unborn child. The years that have followed have had some amazingly beautiful times, to be clear. But, to also be realistic, that poking and testing and pain that started for my son at just 2 weeks of age has continued to this very day. Right this moment he is laying in his specialised medical bed on a specialised medical mattress, two areas of skin bleeding with breakdown, intestines which are no longer tolerating absorption of his formula, and a body that is growing very, very tired.

So today is a bittersweet day for me. My emotions in remembering that moment holding the pregnancy test stick bring tears to my eyes. But they are different tears than those I cried that day. Yes…very different tears indeed.

When a new year starts and the tree comes down

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I finally took our Christmas tree down today, later then I think I’ve ever left it. But alas, it is down and the empty spot is quite noticeable on the sitting room floor. If I look up from that empty spot, though, I see what keeps me going. I see my centre. I see my family. Photos from the past 18 years cover the one sitting room wall.

Photos of good times only.

The photos of the bad times are emblazoned in the ever-saving “cloud” of my mind.

While I took the Christmas tree down, I was stopped twice by the sounds of Brendan Bjorn gagging, retching and eventually vomiting. (remember I wrote last year that this year I would describe the real and raw aspects of our journey?) He started on a new medication a few days ago to try and help his intestinal system work better and allow me to try and increase his feed volume and rate per hour.

This isn’t going to work.
The medication is making him worse.

I spoke to a paediatrician last week. This was the last medication attempt to see if it is a gut motility issue. We didn’t think it was. And now, I definitely don’t think it is. It looks like it is a gut absorption issue, and with that likely inevitable diagnosis comes a huge discussion to be had with his medical and disability care service team: What are the options now?

And once I have those options in front of me, with all the relevant facts, I will go away and contemplate everything...and I will then decide what to do, or not to do, as the case may turn out to be.

So you see, dear reader, it weighs immeasurably heavy on my mind, my soul, my heart, that this year as I take down our Christmas tree, may have been Brendan Bjorn’s last Christmas with us. Yes, I know it may not be, either, and I’ve wondered this same question the past few years. But this year, it feels different. It feels very different indeed. And despite the self-protective numbness guarding my emotions as of late, I can still sense the devastating heartbreak waiting for that guard to drop its precarious defences.

I think I’ll add a few more photos to the sitting room wall this week.

Those days after Christmas. Those days to come.

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It’s the day after Christmas and the house is quiet…for now. Tomorrow, Brendan Bjorn will spend four nights at LauraLynn Children’s Hospice for respite. But, it will be so much more than that. While there, they will help assess if he is to be transitioned to a new level of palliative care on his life-limited journey as his intestinal function continues to decline and he isn’t getting enough fluids.

And as I watch the sun reflect on the windows of the building across the street from me, it feels like more than just another day to me.

I’ve been numb the past week. Nearly emotionless. And for those of you who truly know me, I’m nothing if not full of emotion.

I think my mind is safeguarding my heart right now.

I’m ok with that, because sometimes my heart does need protecting. I can’t crumble. There’s too much to do, to be responsible for, and to take care of: namely, my two beautiful sons. So, today, the day after Christmas, I will prepare for our short journey tomorrow. I will gently bathe my eldest son in his bed, pack his medications, his specialised formula and PEG feeding supplies, his adult-sized nappies, etc, etc, etc.

And, I will try to breathe.

I will also try to remind myself (repeatedly, most likely) that it is ok to feel numb, to be without emotion right now, if that is what it takes to get through the days to come and to be there for those I love.

And it’s time to start the day.
Here is to those days after Christmas, and those days to come.