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.

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

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.

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?