There comes a time when I don’t know how to articulate all that is filling my mind. I sit here alternating my stare between the computer screen and the wall and my words simply fail me. It’s times like these when I know a thought or emotion, or probably both to be honest, is too much for me to carry. It all needs to be lightened, enlightened, and illuminated.

You see, I found something out today that has left me still sitting here in shock, at least I think that’s what it is.

My son has lost 5 pounds in 18 days. My fragile, palliative, beautiful son.

And I am gutted. I am afraid of what this weight loss will do, what it means, and what it could lead to.

Brendan Bjorn spent the majority of the past 2 weeks in hospital. Once again, as it did in August 2015, his body has grown even more unaccepting of the formula which sustains him.

It was only today that he could handle his full-strength feed at the pump rate and amount that he was at 2 weeks ago.

It was only today that I gently carried him in my arms as I stepped onto the bathroom scale to see with my eyes the number my heart had already guessed.

It was only today that I weighed my 9 year old son, Declan – who is 3 1/2 years younger than Brendan Bjorn – and discovered he now weighs 21 pounds (9.5 kilos) more than his big brother Brendan Bjorn.

And I am gutted. I am afraid. 

My sweet angel has been on total bedrest since coming home from the hospital a few days ago. The grade 2 pressure sore must be healed before he can again sit upright on his bottom, which is where the sore is located. It is healing, but slowly. The loss of weight and the lack of nutrition isn’t helping anything, and in fact, it is hurting.

I feel like I am juggling 100 balls in the air all at once and a gust of wind comes whipping through and I can’t do anything to catch the balls or stop the wind no matter how desperately I try. I scramble to pick up the balls from the ground while I turn my back to block the wind from blowing more of them astray. I was doing alright while they were all in flight circulating in rhythm thanks to my long-practiced juggling skills. But all it takes is one unexpected gust and disaster looms.

There is positive to focus on, I do know this, although lately I seem to not write so much about the good parts of this journey. I feel badly about being remiss in this way. So, that being said, the positive:

The past couple of weeks I have seen an outpouring of caring from my community – friends (old and new); networks of strangers-turned-friends who are all like minded people caring about our lovely little island; and the fellow mothers in my local townland. All of these people have come in one form or another to show support, lend a hand, and lift me up. Some gestures small, some gestures large, but all equally appreciated and heartfelt. It is this sense of caring and community that I fell in love with 22 years ago when I first came to live in Ireland. I hope it will always continue in our community, for it is truly what is best about us. And as I raise my son Declan to carry on this thread of caring that interlinks us all within our community, I can see that there is a good chance it will indeed continue on.

Another night and all is quiet for the moment. I seem to have found my words, along with a bit of light, enlightenment and illumination. The pain remains. The fear remains. No one ever said this journey with my son was going to be easy, but oh how thankful I am for all it has given me.

 

 

I wrote my first blog entry in August 2015 while sitting in a Dublin hospital room watching over my son Brendan Bjorn. I write this entry while sitting in a Dublin hospital room watching over my son Brendan Bjorn.

Deja vu.

Once again, his body struggles to accept the specialised formula which keeps him alive.
Once again, doctors devise a plan on what to do, and a plan B if plan A doesn’t work.
Once again, another medication (erythromycin) is added to his daily cocktail, this one to hopefully help gut motility.
Once again, he’s gone days without formula for nutrition and is losing weight.
And once again, the fragility of life smacks me hard in the face – as if I could ever forget.

Deja vu.
Except it’s not just a feeling.
We’ve been here before. 

Like August of 2015, tests have been run, and run again, and all have come back normal. There is nothing we can point our fingers at and say “Ah ha! That’s what’s wrong and here’s how we fix it!” No. Instead it comes down to the neurology of the gut. Did you know the gut is called “the second brain” in the medical world because it has 400 to 600 million neurons? Combine that with a child who has severe neurological damage, and you get a brain and a gut – seemingly conspiring – refusing to send out the correct signals for proper gut motility, digestion, absorption.

Deja vu.
Once again, his body is betrayed by its own self. 

Today we will try to re-introduce formula, at half-strength, into his gut via his peg. I will hold my breath while watching over him, ready to jump if he yet again begins to gag and not tolerate the desperately needed nutrition. And, I will breath a tremendous sigh of relief if he does indeed allow this feed to stay down. The next step would be full-strength formula, and the step after that…home.

In August 2015 he spent 19 days in hospital. The last thing I want is a repeat of that. We’re on day 6 this time.

No more deja vu, please.  

 

 

What some may see is a strong woman, a momma bear who fights the biggest of beasts in the bloodiest of battles to defend her ailing cub. Proud, fiercely protective, a sacrificing mother who gives more than she has to give.

But what they don’t see are the hidden wounds.

They don’t see me shaking uncontrollably as an anxiety attack sets in and I struggle to steady my breath – and my racing mind which delves into the darkness too often.

They don’t see me standing over my son’s bed with my head collapsed upon his thin, fragile chest, as I let out years of pain in a deluge of tears that betray my soul’s deepest pain.

And what they don’t see are my son’s hidden wounds.

Beneath his lovely, soft skin are bones riddled with osteoporosis and scoliosis, leaving him frail, fragile, twisted and now with pain.

Behind those amazing, smiling eyes is a brain severely damaged that betrays him daily with uncontrolled seizures which could easily end his life on any given day.

Under his comfortable cotton tracksuit bottoms hides a wound that has once again broken through to leave raw, bleeding skin which comes with increasing difficulty in healing and a high risk of infection. A pressure sore which indicates a new level of palliative care. A pressure sore which has now left him, once again, bedridden until it heals.

Bedridden, which leaves me housebound.
Housebound without even a walk to help clear my mind. 

The other day I had someone I’ve known since I was a little girl tell me they HOPED I had a DNR for my Brendan Bjorn. How can someone hope a mother has a DNR for her son? Yes, in fact I do, but to say hope? To me, the meaning behind the word hope in this context is that this precious boy, this boy who is one of two whom my world revolves around, would be better off not living. And it isn’t the first time I’ve heard similar thoughts. I’ve been told by someone very close to me that Brendan Bjorn has no quality of life so when the day comes that I lose him, sure won’t it really be better for him and for me? A dagger through my heart is the visual that enters my head at that statement. Even more pointedly, I have been told (time and time again, by some government officials and by those I personally know) that my first born child, this angel, is a burden…a burden on the State, a burden on me in regards to my personal and professional life, that simply put, he is a burden all around.

No, he is NOT a burden. 

And I do not want to hear my son referred to as such again.

What IS a burden are these hidden wounds…

The hidden wounds that are slowly taking his life away from him.
The hidden wounds that leave me, even as I write this very line, drenched in tears and fighting for peace of mind, body and spirit as depression, anxiety, and grief take hold.

What some may see is a strong woman, a momma bear who fights the biggest of beasts in the bloodiest of battles to defend her ailing cub. Proud, fiercely protective, a sacrificing mother who gives more than she has to give. But what they don’t see are the hidden wounds. And what they don’t comprehend is the weight of the burden that are those hidden wounds. 

 

Last night, a nurse saved a little boy’s life. She moved with professional, calm precision as she monitored his heart rate and his oxygen sat level, all while keeping him in the proper position so not to aspirate as his frail body convulsed uncontrollably in a tonic-clonic seizure. The boy’s oxygen sat dropped into the low 80s and his colouring began to change for the worse. Quickly, without missing a beat, the nurse reached for the oxygen tank, turned it on, and put the nasal cannula around the boy’s repetitively moving head. She kept track of the time while doing all of these life-saving activities, getting ready to administer the controlled substance which is a rescue medication to stop a seizure. This time, it wasn’t needed. The boy came out of the seizure just before the 3 minute mark. The nurse then spent the next 30 minutes by the bedside of this disabled boy, who has extremely profound and medically complex care needs, as his body began trembling head to toe in the recovery period after a seizure know as the postictal phase. As his O2 sat reached normal levels, she removed the nasal cannula, careful to turn off the tank and return it to where it would be a reach away, but not in the way. She stayed with the boy, ever vigilant, ever watching, monitoring his temperature and heart rate as he finally drifted off to sleep. She had just saved his life. Again.

But the thing is, it wasn’t a nurse.
It was me last night with my son, Brendan Bjorn.
His mother.
His full time carer. 

If you had read that first paragraph in a newspaper article, or heard it on the TV news, would you have praised the nurse for the tremendous work she does, supporting the well-deserved pay rise her union fights for on her behalf? I know the answer, and it is yes, you would. We all would, and rightly so, for the work of saving a life is a serious job and to be respected.

Yet, just this week, I had (for the countless time) someone ask me, “When did you last work?” Well…when don’t I work? Constantly on call with my mobile attached to my hip if Brendan Bjorn is away from me at school a mere 3 partial days per week, and otherwise he is with me and being cared for by me 24/7, I say the answer is: I am always working. If you doubt that, please do read the first paragraph again, this time picturing a nurse in the A & E, and then tell me if you would dare to tell her she isn’t working. Now that we have that settled, let’s talk about pay.

I am actually a CNA – Certified Nursing Assistant. With that, I have a question: what if carers all had the opportunity to obtain this type of training and certification and, based on the level of care needs of their loved one, they got paid accordingly?

Now hear me out, please.

If we carers had this (or similar) certification, were hired by either the HSE or via a home health care company contracted by the HSE, paid the fair market rate for the professional-level work we do, we would be able to contribute to our own future by paying into a pension scheme, pay taxes, save money, and have far more money than we do now which would surely in turn be put back into the economy by way of our new purchase power.

We could even finally qualify for a loan so to purchase our very own home if we wanted! We would be off of the social welfare rolls that we are currently, wrongly, relegated to, complete with all the negative connotations and economic restrictions that come with it.

We could have a CV that is still being built upon, rather than what we now have which is a glaring, many years long, hole where we cannot show any employment. And that, dear reader, isn’t going to help us become employable when/if the time comes that we no longer are full time carers. Remember, it was only this week when I was once again asked, “When did you last work?”

We might even be able to afford our own mental health counselling, which many of us need due to the demands of our highly stressful jobs. (Yes, it IS a job).

Ultimately, we would be less dependent on charity and government assistance. 

We would be more financially secure (including having the increased sense of self-worth that comes with not being forced into dependency) and could rest assured knowing that there is a retirement pension building rather than a future destined to be filled with poverty.

Last night, a nurse saved a little boy’s life. Again.
But the thing is, it wasn’t a nurse. It was me last night.
His mother.
His full time carer.