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.

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.

“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.”