In advance of Children’s Hospice Week 2021: The hard talk.

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Children’s Hospice Week starts next Monday. I’m fast approaching 17 years on this journey with my profoundly disabled son with a life-limiting condition. If you had asked me even a few years ago would Brendan Bjorn still be with us, I would likely have said I seriously doubt it. But remarkably, thankfully, his time with us is not yet over.

Just this morning, I was awakened to him vomiting. His digestive system continues to decline and he grows less able to handle the mere 45 mls of formula per hour that he receives. He needs vented via his PEG more often now throughout the day, even with a Farrell Valve bag attached to his feeding system. (see photo attached to this blog piece for an idea of just how little that is: about 2 swallows to you or me. I normally attach a photo of him smiling, looking the picture of health, but this piece is about hospice; about being life-limited; about dying).

This is part of our journey, his path, my path.

I’ve grown more philosophical – and more realistic – over these past 17 years and as such this blog piece may very well be too hard of a read for parents just starting out on this journey. That’s ok. I don’t think that 12 years ago, when my son was just 5 years old, that I could have read what I am now about to write.

But yes, I’ve grown more philosophical. Maybe it’s better described as having gained some transcendent level of acceptance that my first born child, my beautiful, precious son, will in fact die far too soon. At this point of the journey, I accept it, for this is the reality. I could even say that I am at peace with it (that takes years, by the way) as I believe he will transition to a far better place than where he is now. I don’t know what it will look like, and I don’t think anyone really does, but my faith in our souls carrying on beyond the bodies we are now is firmly resolved.

And so, I accept what will come. The reality is my son will die before the natural order of what life should be.

On this journey, most parents like me meet many other parents walking the same road and with that comes watching some of them lose their child before it is our turn to face that painful reality. I’ve seen so many of my friends go through this loss. I’ve watched – and felt – the rollercoaster of emotions in the weeks, months and years afterwards. The opportunity to once again live a life free of the overwhelming responsibilities caring 24/7 for a profoundly disabled, fragile, child. (Note: I recognise that may sound cold or detached. It really isn’t. It is simply where, after 17 years, I am at in my own personal journey with my son). I have seen my friends move from finding that freedom and spontaneous nature in life again to the next day being on the floor begging for just one more day with their child.

And I have no doubt at all that I too will be on that rollercoaster once the time comes.

Children’s Hospice Week. We can’t talk about the upcoming week and this journey without talking about death. It’s a topic we all try to avoid. I don’t think we should, especially not this week. It is with talking about the fact that our child will die too soon that we can begin to genuinely let go of the fear surrounding that inevitable event. In releasing that fear we can more easily find the peace that comes in accepting this journey and embrace the lessons for us and those around us.

I have long said that the greatest lesson Brendan Bjorn has taught me is that of unconditional love. I now amend what I said and will say this instead:

To be able to truly feel and embody unconditional love for a child you know will one day die, but to reach a place of experiencing that all too rare of unconditional love without any fear of that certain loss, that is the greatest lesson – and gift – he could have ever given to me.

I am no longer afraid of that day, whenever it comes. I just hope, more than anything, to be by his side, holding him in my arms, stroking his lovely, thick hair as he likes me to do, so I can whisper just one more time in his ear how very thankful I am to have him as my son and how my love for him will never, ever die.

45 mls of formula per hour

Life as a high-risk carer: On vaccines, school, and one year rolling into another.

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It’s been a year now, hiding away in our home in an attempt to avoid serious illness – or death – during a global pandemic. It’s been a year like no other. It’s been harder and lasted longer than I could have ever imagined.

Until my very high risk son Brendan Bjorn is vaccinated, our year hiding rolls into more than a year.

Until I am vaccinated, being high risk with multiple underlying conditions, our year hiding rolls into another which continues to send waves that have me struggling to tread water in this unprecedented storm called a pandemic.

This week last year, I made the decision to pull my two sons out of school. I knew enough to know that what was about to hit us would be very dangerous. I know more about viruses than I ever wish I had to learn. But, as it was and as it is, I do understand, and so I made the decision before the government closed the schools. I wrote this piece last year about that decision.

In the year since, it’s been a fight to keep my youngest son, Declan, home to protect both his brother and me and receive remote learning. It has not been a fight, though, to keep Brendan Bjorn home. He’s very high risk, so he’s entitled to stay home.

Viruses are communicable. Transmissible. And some, very deadly. This is why the world has been brought to her knees with this pandemic. So why have I had to fight for remote education for Declan, knowing full well that him sitting in a classroom with 30 other teenagers in a school of 800+ teenagers would exponentially increase the likelihood of COVID19 entering our home?

I now await word on if Declan’s school, once they reopen next month, will continue to provide remote education for him or not. I’ve written to them, asking if they would please continue so he can progress to second year with his class when he joins them in person this September once Brendan Bjorn and I are vaccinated. Now, I wait.

I also wait for the call from the GP to say when Brendan Bjorn and I can come in for our first inoculation. People aged 16 and up who have underlying medical conditions which put them at very high risk have been moved up the vaccination priority list. Where will she decide Brendan Bjorn is on that list? Where will she decide I am on that list? I don’t know. Now, I wait.

I seem to have spent the last year waiting, and so far, nothing has changed in that regard.

This evening, I watched the news of 320,000 students returning to school today in Ireland. Neither broadcast I watched mentioned that children can get very ill with COVID19 or that they can, and do, transmit it to their family members in the home. There was no mention of the dozens of children hospitalised with COVID19 in the past few months with school closed…and there was certainly no mention of how the now predominant variant B117 is much more transmissible – and it wasn’t the COVID19 variant last time schools were open, but it is now.

Read this report compiled by Parents United Ireland (click here) for detailed information on COVID19 and Irish schools.

I am afraid this is a disaster waiting to happen.

It is one wait I hope doesn’t have a result that I expect.

photo by Tracy McGinnis

Trying to breathe

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In a few weeks, it will be one full year that the boys and I have been cocooning or shielding – hiding away in our house trying to stay well and alive in the pandemic. Lately, there have been many days when I felt I just can’t breathe. Sometimes literally, but mostly figuratively.

I want to breathe again.

I’ve been asking a lot of questions lately as I try to research about the various COVID19 vaccines, searching for updated data on possible side-effects for various underlying conditions of the people who have so far had the vaccines. In Ireland, only vague data is available. In contrast, I find detailed data out of America via the CDC there. Having said that, they aren’t administering the Astra Zeneca vaccine so there’s no data on it from them. Ireland seems set to administer the AZ vaccine to what will be the bulk of the population, including people with underlying conditions, despite the fact it is far less efficacious and it wasn’t trialed on people with underlying conditions.

I like to be informed, so when my legitimate questions aren’t answered, the stress is overwhelming…and I can’t breathe.

There is talk of school reopening next month. Declan and Brendan Bjorn will remain home until at least I am vaccinated, but preferably until Brendan Bjorn is also. As he’s only 16, and children under 18 in Ireland aren’t yet approved for the vaccine, I don’t know when or if that will even happen. Considering that, I will likely send Declan back to school when I am vaccinated and have to just keep him and his brother, his only sibling, apart. That will be heartbreaking.

I think of Declan – a young boy who is missing out on so much by being at home, keeping me and his brother safe, but who also has a life-long history of respiratory infections including multiple pneumonias, RSV, and bronchitis – and I wonder, will he be safe when he does return to school?

And with that worry, I can’t breathe.

I started using a C-PAP machine for obstructive sleep apnea this past week. I’m still trying to get used to sleeping with what amounts to a snorkel on my face and air blowing at me all night long. I think it’s too early to tell if it’s helping some of the related issues, but I’ll of course give it time. I will hold out hope that I will be able to breathe better soon.

As a lone parent carer, I don’t think life has been harder in these last 17 years than it has been this past year. New COVID19 variants, negligent decisions by the government, isolation, vaccination concerns, caring 24/7, exhaustion, loneliness, poor health, parenting challenges, open wounds not healing (yes, figurative and literal), frustration, anger, occasional despair…and so much more…

I am trying to breathe, but some days it’s hard to do.

On January 30th over the years

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I have’t been in the frame of mind to write a blog in awhile. I guess that’s what happens when a global pandemic leaves you locked away in your home for going on 11 months now with 2 sons, one of whom is profoundly disabled. This morning, as I scrolled through my Facebook memories of the day, I was struck by two memories in particular. Struck enough so that they’ve prompted me to once again write a blog entry.

January 30, 2004. Hard to believe that was 17 years ago. Time and life certainly have a way of flying by, don’t they? This was the morning I woke up and did a home pregnancy test. I said a prayer before I took it, hoping it would be positive. After 4 miscarriages and having to seek the help of an infertility specialist, I paced up and down the bathroom floor as I waited for the longest few minutes in history to pass by. Positive. It was positive. I literally fell to my knees crying in thanks. And even though I knew, considering my miscarriage history, that it would be a rough road, I had another chance and that’s all that mattered.

January 30, 2021. The boy who finally made my dream of becoming a mother is down the hallway now, laying in his medical bed, watching Finding Dory, in between doses of his many twice-daily medications. Brendan Bjorn. My first born son. The reason for this blog. The boy who is now a young man. At the risk of repeating myself, he has taught me more about life and love than I could ever have hoped to teach him. Never a truer word was spoken. And while this journey has been incredibly difficult and it has certainly taken its toll on me physically, his purpose in this world – what he has taught the world about unconditional love – must be the primary focus as I look back over the years.

January 30, 2010. Facebook reminded me this morning that it was on this same date in my life, just 6 years later, that my second born son – my “miracle boy” Declan, as I think of him – graduated from a crib (cot) to a toddler bed. Tears rolled softly down my face this morning as I looked back at the photos of him excitedly practicing climbing on and off his new bed. The little fuzzy stripped sock-covered feet. The round face and curly hair. The look of total innocence and wonderment.

January 30, 2021. I miss those days. I miss those looks and giggles and that size I could scoop up in my arms and cuddle with on my lap. I miss those days where he was filled with nothing but hope and curiosity. Today, he lays in his bed, still asleep as I’d imagine most boys about to turn 13 are doing on this rainy Saturday morning. I think of the 3 of us in our little family, it is Declan who has been most adversely affected by the pandemic, and it rips my heart out. I continue to wrestle over my decision to not send him into his 1st year of secondary school because of the pandemic; to keep him home to protect his very high risk brother and me, his high risk mother. He’s missed out on so much being home, not just academically, but socially, and I see the regression. Yet, if he lost me or his only sibling to COVID19, I still believe that would be an even greater loss for him. A loss, or losses, he could never recover.

And so, I will try not to wrestle so much with my decision…but it is hard not to do.

When I can get the vaccination (assuming it’s shows safe for people with an auto-immune disease), I will send him back into school. At least, that’s my plan now. If Brendan Bjorn can’t be vaccinated, that will mean I’ll have to keep the boys apart, and that will be utterly devastating. They love each other dearly.

But I know it’s time that Declan needs to take the next step in his life, to move from that cot to the toddler bed, to move from being a young boy to being a young man.

Time will tell, as it always does.

What you don’t see

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Sometimes I wonder if, as a mother and an advocate fighting to be heard, I should stop sharing only the photos and videos of my son’s joyful smiles.

I wonder…if I shared photos and videos of my son retching multiple times a day, vomiting if I’m not fast enough with venting his PEG, to show just how intensive caring for him is, would the public better understand?

I wonder…if I shared a video of my son in a full tonic clonic seizure, turning blue, requiring me to hook him up to O2 quickly all while managing his body and his airway, would the relevant government officials finally grasp that life hangs in the balance every single day in my home.

I wonder…if I shared photos of my son’s multiple scars from multiple operations and multiple pressure sores, would you who are reading this begin to understand what he’s endured on his journey so far?

I wonder…if I tagged health advocates, including doctors and nurses, on social media in tweets of such photos and videos, would it finally drive home to them that carers like me are indeed providing skilled, nursing level care around the clock – but with no rights, no pay, no pension, and no time off – all the things they passionately fight for for other health care providers.

In the past, I have shared such photos and videos, as have other families like mine. I’ve found it’s either met with pity or avoidance or even with accusations of seeking attention. Guess what? Families like mine do want attention, but not for pity. We want, no strike that, we NEED to be noticed so that reforms can happen, so that we can finally receive equality, fairness, and justice, and so that we can finally have the level of services required to have a quality of life on par with the rest of society.

Is is wrong to ask for such things?

No, of course not. And so, there will be no smiling, joyful photo attached to this blog piece.

Scar from spinal fusion and the crease around his waist which was created by being forced to wait 17 months for an *urgent* spinal fusion while his spine crushed down on him. That permanent crease requires constant care, opening up and bleeding on a frequent basis.
Wounds that a mother can’t heal

236 days and counting

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It’s been 236 days since I took both of my sons out of school due to the risk of COVID19. But this piece isn’t about them. I’m going to be selfish and focus this blog piece not on either of my sons tonight, but on me. You know, the glue that holds this family together.

Something about me: I’m an introvert. Despite being outspoken and not afraid to speak my mind, I’m a true introvert as Carl Jung first described the term. I need quiet, solitude, a place I find peaceful, to re-calibrate my centre. It’s how I replenish my inner strength, balance and calm. It’s how I clear my mind.

236 days of not having even 1 day with a few hours alone has been the absolute worst thing about this pandemic for me personally.

When the boys were in school, I at least had a few days a week (as Brendan Bjorn only went part time) to have that solitude to recharge myself. With them home, I am on constant duty surrounded by noises from the TV to the PS4 to the feeding pump beeping. I’m accustomed to being on call every single night, video/audio monitor at my bedside all night long with the sound of the feeding pump and Brendan Bjorn waking or coughing or what have you, but during the day while they were at school had been my chance to get away – even for a few hours – from being on this constant high alert level of caring.

What COVID19 has stolen from me is the ability to get out of the house…alone…and find that peaceful place.

There is a piece of art I came across 6 or 7 years ago that struck me the moment I saw it. I’ve attached it below on this blog piece. As I lay in bed unable to sleep last night, I thought of this picture and what it is about it that I like so much. For me, this picture looks like what my spirit feels like when I’m at peace, centred, and spiritually calmed. It resonates with me for this reason and I remember that feeling as I look at the picture.

For me, I know that more than contact with others or going to shops or getting my haircut or any of the other things so many people complain about not being able to do during this pandemic, and especially during a lockdown, it is experiencing quiet solitude that I yearn for most right now.

I will dream of a time I am free again to nurture my spirit in this way.

Until then, I will look at this picture, close my eyes and remember the feeling of peace I get when walking in the mountains somewhere, a breeze bringing the gift of nature’s fragrances, and nothing to hear but the birds calling their mate and a nearby stream finding its way.

“A Celtic Dream” by schattenlos on DeviantArt

1,000 years of learning

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Last night I spent some quiet time contemplating the state of the world. I came away with a few thoughts. I hope they help anyone taking the time to read this humble blog.

Years before Brendan Bjorn was born, I heard an interview on the radio with a lady who had terrible health issues and many disabilities. She said something in that interview that has stuck with me, as if my soul knew in advance that I would need to remember her words for the journey to come years later with Brendan. The interviewer asked her how she coped daily in light of all of her challenges. She said the following:

I used to ask Why me? But then I realised the question to ask was, Why not me?

Indeed, rephrasing that question changes the entire perspective of the challenges before us, doesn’t it? I think so.

I’m writing a book currently. It covers 1,000 years of history. So, last night as I sat pondering the state of the world with the pandemic, it struck me that history holds a lesson for us today. Humankind has been through pandemics, world wars, viruses that run out of control (** and still do), plagues, and more.

The lesson? Like how the lady in the radio interview so wisely made her point, I’ll phrase it in a question: Why do we now think we are exempt from such trials? As the lady in the radio interview said, Why not me?

So, why not us?

There is no answer. Just as there is no answer to Why not me?

Humankind has been through worse. And we may likely go through worse again in the future. We all need to remember that there was never, nor will there ever be, a guarantee that the way the world lives is to be the way it shall always live. Ways of being, ways of doing business, ways of living and interacting have always evolved over the generations. But we get through it, collectively, and we will again.

There is a release, a relief, in accepting this understanding.

I know first hand how desperately hard it is on a personal level. The isolation. The fear. The worry. The financial impact. I get it, truly. This year has been hell on many levels for me. But it was in these realisations last night that I felt an emotional weight be lifted from me. So, I write this blog piece hoping it may help anyone reading this in the same manner.

We will get through this, in time, and we will come out on the other side of it as a changed, and hopefully better, people.

** As those of you who have followed my journey know, the damage done to Brendan Bjorn’s brain in utero was the result of a virus, cytomegalovirus (CMV), likely contracted by me while I was working as a Child and Family Therapist at a public mental health clinic as the most common way a pregnant woman contracts CMV is through young children. There is no vaccine for CMV. It continues to be a leading cause of birth defects. It is a very common virus. The last 16 years of my life have revolved around the damage done by a virus. Considering this, my absolute hate for viruses is palpable, lest anyone think I’m not considering the impact of the current pandemic. I am.

One carer’s response to the Irish 2020/21 budget

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The Irish government announced the new budget yesterday. This morning, I have had the night to gather my thoughts up off the floor. I will try to make this clear and to the point.

Carer’s Benefit NO CHANGE
Carer’s Allowance NO CHANGE
Disability Allowance NO CHANGE
Carer’s annual grant, increased by €150. That’s .41 cents per day more.

I think what many people, including the Government, don’t recognise – or accept – is that we carers have been WORKING MORE during the pandemic. We ARE indeed the front line of defense in health care for our disabled loved one.

We DO have extra expenses yet LESS “time off” (if any) and many carers have NO help at all.

So while we may not be working outside the home to keep your local pub going or on the stage to entertain you, we are working diligently behind the scenes to keep our health care system & hospitals afloat, that much less busy, during the pandemic.

We ARE WORKING.

I’m finding that when politicians say they are “helping the most vulnerable” in this budget, they’re completely forgetting those truly so profoundly disabled that they aren’t in school or day services; those at home, the incapacitated, fully dependent on a carer.

Most all other work sectors have received income supports. But not carers. Ask why? And then ask how much it will cost the State when carers like me collapse, no longer able to provide the 24/7 nursing-level care to our incapacitated, profoundly disabled, loved one.

I guarantee you it would cost a hell of a lot more to staff nurses around the clock, but this is what the government is risking in not supporting carers like me.

We ARE WORKING.

16: When a warrior grows weary

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Today, October 1st, 2020, my warrior Brendan Bjorn turns 16 years old. A direct descendant of Brian Boru, Rollo the Viking, Robert the Bruce, Kings and Lairds and Warriors down many centuries…to today, to him: My first born son, my Brendan Bjorn.

And today, he reaches an age I never thought – but had desperately hoped – he would see.

His body grows tired, as it does with any true warrior, with the passing of time. He’s fought so many battles. He continues to do so. But he is here today, his birthday, to celebrate 16 years of life. It’s a life which has brought to me indescribable love and lessons which could not have been taught if this journey was anything other than what it is. My son also gave to me the gift of becoming a mother. As I’ve always said, he has given me far more than I could ever give him, and it is true.

I started out on this journey with Brendan Bjorn wanting to give him the gift of healing. I prayed daily for a miracle for years on end. It wasn’t to be. That wasn’t his journey. It isn’t why he’s here. He is here to teach, to give, to love, and oh, how he has done just that. Beautifully.

16 years.
It’s been some journey.

This year has been like no other for all of us. 2020 has brought the world to spin upside-down in many ways. I won’t think on that today. Instead, I’ll relish in the gift that is my son and in his own special place in the history of this world. For he does have his place, just as all of those warriors from whom he has descended.

Happy 16th birthday, my heart, my son, my warrior, Brendan Bjorn.

I love you more than life itself.

What hasn’t changed with COVID19

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As if it’s a distant memory faded over time, I think back to when the COVID19 pandemic began and the hopes…yes, hopes…I had for society. As country after country went into lock down, I had a notion that maybe now society would finally understand what it’s like for families with a profoundly disabled loved one and a life which leaves them isolated and usually home-bound.

It’s been 5 months since lock down happened in March and not much has changed. Not for me and my family and, unfortunately, not for society in terms of the understanding I had hoped would be gained.

No, nothing much has changed.

Lock down has lifted, yet we still don’t get out but on the seldom occasion if we can find a remote place to go where we don’t have to contend with people coming too close and not wearing masks. Even without COVID19 in the equation, there’s still the restriction of no more than 3 hours a day for Brendan Bjorn to be in his wheelchair, how he feels, if his pressure sore areas are acting up, if the weather is fine and if my back feels up to the lifting.

Nope, nothing much has changed.

We’re still isolated. Groceries are delivered, as is anything else we need as a household. I’m the handyman, the accountant, the maid, the nurse, the teacher, the mother and father, the gardener, the cook, and everything else in between. I still go weeks without talking to anyone on the phone except business matters usually related to Brendan Bjorn. There are still weeks I never pass my front gate.

That desperation society felt by being in lock down has been forgotten.

Carers and families such as mine, again…still…also go forgotten.

The empathy I hoped would be gained by society never evolved. While there was a glimmer of recognition for carers at the beginning of lock down, it quickly dissipated as freedom’s shining light burned off the fog that is being restricted to one’s home for weeks on end. Society ran toward the light forgetting those still left in the fog: Carers and their disabled loved ones.

School is reopening and the media is abuzz with stories of normality and hope and smiling children and all of those warm, fuzzy feelings that existed before COVID19.

Yet, the virus hasn’t gone away, no matter how much we want to deny it’s looming existence. For some of us, we just can’t embrace those warm, fuzzy feelings of normality because we know too well that if we do, we’re likely gambling with the life we’ve been working so hard to save for so many years.

No, nothing much has changed.

My son, Brendan Bjorn, is in his medical bed next to me here in our sitting room as I write this latest blog piece. He’s out here because of what appears to be a long standing water leak resulting in black mould in his room which I only discovered a few days ago. Until I can afford to get it all repaired, this is our new normal. It’s ok, actually, as it’s a comfort to have him close while he’s going through a rough patch in his health lately.

My son, Declan, is another story. I’ve struggled with the decision on whether or not to embrace the rest of society’s normality of the return to school for him. He’s starting secondary school this year. A huge step. A right of passage. A journey to becoming a young man. Yet, I hesitate because of COVID19 and what it would mean if he was to bring it home to his older brother. Alas, I can’t embrace the normality. Not yet. Not until we, as a society, see what happens once schools are back in full for a few weeks.

If only the government had put into place a plan for remote learning for students such as Declan who have a Very High Risk family member in the home. But no, forgotten once again, families like ours, by a government and society that didn’t gain the empathy, nor the understanding of the fragility of life, which lock down could have, and should have, brought.

Nope, nothing much has changed.