Why haven’t you heard about CMV, cytomegalovirus?

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I want everyone seeing this to please, please read it, and then share it. This blog wouldn’t have ever been written if it wasn’t for me having contracted CMV, cytomegalovirus, while I was pregnant with my son Brendan Bjorn. This particular blog entry is being written this morning because a letter my son Declan brought home from his school yesterday hit me very hard. It has left my heart breaking and my thoughts reeling as I am reminded of the fact that CMV is seldom heard of, despite it being a very common virus.

Please, please read this piece.

Laying on the table to the right of my laptop is the letter. It describes every parent’s nightmare: That of having a child with a life-threatening illness, in this case, cancer. The letter continues to rightly ask parents to not send their children to school if they develop chickenpox, shingles or measles in an effort to keep this precious child as healthy as can be. It goes on to encourage the MMR vaccine, again, rightly so in my opinion.

What it of course doesn’t mention is CMV, cytomegalovirus, because:
1. The majority of the public don’t know about CMV
2. There is no vaccine for CMV.

I should also note that CMV is in the same viral family as chickenpox and shingles.

Back in the early days of CMV Awareness campaigns in America, those of us involved in the campaigns were well aware that experts in virology and CMV were concerned of what was often described as the potential of mass-hysteria if the public knew about CMV and that there was no vaccine. But the flip side of that worry is that, as history has shown with other viruses and vaccine development, public outcry…indeed, even mass hysteria on a certain level…is often the catalyst needed for governments to fund vaccine research as needed.

Instead, as of today, funding is still greatly lacking, the public still isn’t knowledgeable about CMV, and not enough has changed.

Cytomegalovirus is a common virus. It is also a common illness in childhood but is often asymptomatic (meaning showing no outward symptoms) or presents with flu-like symptoms. Nothing which would raise alarm to a parent. And frankly there’s nothing which would be done even if it was known to be a CMV infection as it is essentially harmless as a childhood illness.

BUT…to a child with cancer, as the one in this letter sitting next to me, a CMV infection could potentially be devastating because the virus taxes the immune system needed to fight cancer, instead leaving it trying to fight CMV.

This is often a serious concern for cancer patients of all ages who also carry CMV. 

Once a person contracts CMV (approximately 80% of the world’s population will have contracted it by middle age), the virus remains for life, usually dormant, but at times reactivating. This reactivation often happens when the body is stressed in some manner – injury, illness, exhaustion, etc. When it reactivates, the immune system fights to again suppress the virus. This cycle goes on for a person’s life.

What is needed is a vaccine to eradicate this virus, but as there are various strains of CMV, researchers find this a very difficult, complex task. They must continue this important work and must be properly funded. 

Congenital (meaning present at birth) CMV is what affects my son Brendan Bjorn. Best guess is that I contracted CMV early in the pregnancy. When a pregnant woman contracts CMV, there is an approximate 1 in 3 chance that the virus will cross the placenta and attack the developing baby, including the brain. This is what happened to my beautiful son. This is the virus that left him with severe brain damage in utero, unbeknownst to me or any of my physicians. This is the virus that has left his body fragile, profoundly disabled, medically complex, and which one day will take him from me.

Congenital CMV (cCMV) disables more children each year than does Down Syndrome, Fetal Alcohol Syndrome, or Spina Bifida. cCMV is the leading, non-hereditary, cause of childhood deafness. Of the approximate 1 in 150 babies born positive to cCMV, 20% will have a life-long disability. cCMV is one of the leading causes of childhood Cerebral Palsy.

The most common way a pregnant woman contracts CMV is from young children, including her own, who have a current active infection as the common childhood illness that it is. And remember that it is often asymptomatic.

CMV is spread via bodily fluids: Urine, saliva, semen, blood. Until a vaccine is one day developed, all that can be done to protect from contracting CMV is to take extra hygienic precautions. If you are pregnant, wash your hands thoroughly after changing nappies or being exposed to bodily fluids. Don’t share utensils or cups while eating. Don’t kiss your young child on or near the mouth, instead, kiss them on their forehead. Educate yourself, please. You can learn more about CMV here.

There is no vaccine for this insidious, common, virus. 

God how I hate cytomegalovirus with every fibre of my being. 

I look back at the letter from Declan’s school knowing that CMV poses maybe an even greater risk than the mentioned measles to this child with cancer, as CMV is much more common that measles nowadays…and the same feeling of helplessness arises in me as it did nearly 15 years ago when I first learned about cytomegalovirus. I wish to God there was something I could do, but short of continuing to raise awareness as best I can, there is nothing more to do.

Please share this to help raise awareness of CMV, cytomegalovirus. 

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Photo credit: CMV Action UK

Today has been a long time coming

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Today is the first day since moving into our new home in January that I’ve actually been alone in the house. Why? Because today is the first day in two very long, very challenging years that Brendan Bjorn has been able to attend school.

Today has been a long time coming.

I sit here in the unfamiliar silence – not even the sound of a feeding pump churning away – and wonder, should I get up and do the washing up which has been left for me to do? No, I don’t think I will. Not just yet. I’m going to sit here and do absolutely nothing for a few minutes. When I say absolutely nothing, what I mean is that I don’t have to be on high alert right now waiting for an alarm to sound or my son to cough and run down the hallway at a moment’s notice. No, I actually don’t have to do anything at all right now, not even be on high alert.

Today has been a long time coming. 

When I brought Brendan Bjorn into his new classroom this morning, he was very quiet. No smiles. Not his usual happy self. I was worried. I had a nice talk with his teacher, the classroom assistants, and the two school nurses – my mind racing as I tried to remember nearly 15 years of what to say in the space of 15 minutes. I think I covered the bulk of it, but undoubtedly there’s always more to say.

As I was finishing talking with one of the nurses and we made our way to the exit of the school, we stood in front of the windowed wall where the Friday morning assembly was taking place. Across the room I could see Brendan Bjorn. He was watching all of the students gathered together…and he was cracking up laughing!!! The smile from ear to ear, his arms stiff with cerebral palsy being forced upward to his chest as his joyful body took control. An indescribable feeling came over me at witnessing such a beautiful sight.

I wanted to cry.

That’s my boy. That’s MY baby in there, laughing, back amongst his peers, and he is happy. My heart skipped a beat and I fought back the tears as I finished the conversation with the nurse while we both watched Brendan Bjorn.

As I drove away from the school, I let the tears flow.

Today has been a long time coming.

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On this day over the years

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Most mornings I can be found sitting at my laptop with a cup of hot coffee perusing social media in the silence of the morning before the boys wake. Part of this routine involves looking back at my Facebook memories of the day. Something about this day – August 14th – seems to have been filled with medical issues for Brendan Bjorn over the last number of years. It struck me so much this morning that I now sit down to write this piece about those days…just a few days in the many years along this journey.

14 August 2010 –
Brendan’s 3rd leg/hip surgery is tentatively scheduled for Sept. 14th. The challenges, pain & suffering my poor little boy has to endure just rips me up inside.

14 August 2012 –
Just off the phone with Brendan’s epileptologist. I asked about VNS and Keto diet as possibilities to lower his EEG status readings if this new med doesn’t. He said that while we could try, he would question whether it would be worth it to put Brendan through surgery or the Keto considering the extensive brain damage he has from CMV. I do see his point, but am disheartened all the same. So, here is hoping the new med will work.

also on 14 August 2012 – 
on the phone with Brendan’s PT…I feel my blood pressure rising quickly. 
(Note: He had been discharged from regular physio because he was deemed to no longer be making progress and they would only do physio for children who made progress with the therapy)

14 August 2013 –
I just got a call from Brendan’s GI doctor and he wants to see him in 3 hours rather than in 2 weeks. Brendan has been having issues tolerating his feedings (being in pain when being fed, and even times when not being fed) and he’s been bleeding from his G-button site. Time to hop in the shower then head to Children’s Hospital.

14 August 2015 while in hospital – 
Brendan update….
The GI doc came today. Thank God she agrees with me that he needs scoped! It will be done late afternoon Monday so he’s in hospital at least until then. If the scope doesn’t show what the issue is, the doc said she will then order a barium scan of his intestines to see if there’s an issue. Let’s hope the scope Monday will be all that’s needed. He’s in a lot of discomfort today. Vomited twice, once with fresh blood.

14 August 2018 –
I received a phone call this evening. Again, Brendan is not on the operating schedule for the next 2 weeks. No reason given. They meet at the end of each week to discuss the following 2 weeks cases. I asked why Brendan is not yet assured he will be on the September operation schedule at some point in the month. It’s not that simple, I was told. I said how he’s been on the URGENT list for over 14 months now and grows worse, and if this keeps up, he will be unfit for surgery at all. I want a surgery date. Brendan should now be considered an emergency and at the very top of their list. This is inhumane and cruel. I am about to lose the plot altogether! 

Today, 14 August 2019. I look back at this journey on this day with wonder at how all 3 of us have made it to today. More scars, more heartache, more fighting for care…but we are here to see this day, and for that, I am grateful. This very moment I can hear Brendan Bjorn’s sweet laughter coming down the hallway, making me smile in the midst of remembering the above difficult memories from this date over the years. And with his laughter comes a sense of peace.

Sometimes lessons learned on this journey take years to become clear. 

The storms will come again, of that there is no doubt. Some are even brewing already. I can’t keep Brendan Bjorn out of the storms on his journey. All I can do is try my best to keep him sheltered from harm while the storms rage on. I’m not the same person I was 15 years ago when this journey began. Nor am I the same person I was during all of the storms listed above on this date. I am ever changing, growing, as I weather these storms with my precious son…just as it should be.

quote about storm and changing

 

My week: respite, love, hate, apathy & home

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Hate is an ugly, divisive energy. So is apathy – sitting idly by and watching those actively hating others while not doing anything to defend the target of hatred.

Love is a precious, gentle yet powerful, energy. With love, there is no apathy – one doesn’t sit idly by not sharing the gift that is love. It is given freely, nearly demanding it be given away in its radiance.

Misunderstandings are part of life, but it is the mature, measured response to first clarify intent before delving headlong into hate-filled responses.

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This past week, Brendan Bjorn spent the week away in respite. I missed him terribly, yet at the same time, I knew I needed the break from the complex, all consuming caring 24/7. I knew Declan also needed my undivided attention. We had fun. We ran errands. We attended medical appointments that had been put off for far too long. And then we had more fun.

But still, there was a hint of guilt as I let myself accept that if felt good not to have to do that complex and all consuming care. So, the week was, in a way, bittersweet…as is much of this journey. 

This morning, a slow and relaxing Sunday, Brendan Bjorn is back in his own bed and the house is again as it should be – full of immeasurable and unconditional love. There is no hate to be found in these walls. There is only love. And that feels amazing. It’s as if I am once again whole. My world is back as it should be. My little family together again.

I started out this piece talking about hate and apathy. Odd topic for one of my blogs, I realise. I did this because social media is rife with hate and apathy lately and it’s becoming stifling. It’s overwhelmingly sad and disappointing. If it wasn’t for the connections to so many specials needs families also on this journey, for the advocacy work I do around this area, and for it being how I can interact with the world outside of my door, I would leave social media today.

Some day, I will leave it behind. But for today, I’ll remain.

I need to learn how to become more apathetic, believe it or not, toward those who hate and toward those who are apathetic when those that hate dole out their hatred on others. I need to learn to ignore, is what I’m really saying. To not soak it in emotionally. But, if I do that, will I, too, grow as cold as those who hate? I don’t want that to happen. So, a fine balance must be found.

I first moved to Ireland a very long 24 years ago. I was young, single, no children, and fell in love with the sense of community and caring. I built friendships that to this very day remain strong. I’ve loved here, I’ve lost loves here, and I’ve grown here. I’ve been right and I’ve been wrong here. I’ve received greatly and given greatly…or at least, I hope I have. I’ve tried. I will continue to try. Sometimes I speak out too much. Sometimes I’ve not said enough. Sometimes I’ve been misunderstood. Other times I’m the one who has misunderstood. This is all the nature of this journey called life.

I am an immigrant in Ireland who has recently, and again, received hate for being such in the increasingly intolerant world that is social media. And, I’ve seen others sit by with apathy as the hurtful hate is doled out. But I’m learning, slowly, that the words of hate, the accusations and lies, actually say far more about those who spew the vitriol than it does about me. Even at this age, there is always learning to be had. And I am thankfully learning.

I’m also reminded that life is too damn short. It is priceless. It is fleeting and messy and beautiful and painful and joyful. I don’t have time for the hate. I don’t have time for the apathy. I don’t have time for blind judgments without seeking understanding.

I – indeed, we – only have time for love.

Those two boys down the hallway from me right now?
They are what matters. Full stop.

 

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Belonging

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“In post-modern culture there is a deep hunger to belong. An increasing majority of people feel isolated and marginalised. Experience is haunted by fragmentation. Many of the traditional shelters are in ruins. Society is losing the art of fostering community.” – John O’Donohue, Eternal Echoes. 

A few days ago here in Ireland, an elderly man was found dead in his house. He had been dead for 7 months…and no one noticed. Just over a year ago, a similar situation happened, actually in the same city, where another elderly man lay dead in his apartment for 6 months before anyone noticed. This tragic story reminded me of the same happening just down the road from a school I had worked at years ago in the States when an elderly lady was found by a utility worker as he looked in her living room window and found her dead on the couch. She had been there about 9 months.

As it did all those years ago when I heard about the old woman down the road from the school, the story this week upset me terribly. I think it should upset everyone, to be honest, but I don’t think it does. Maybe because I travel along this journey’s road isolated from that increasingly rare sense of community, I can empathise with the situation of being no one else’s priority. (Not dramatic. It’s just the truth.)

Let me explain that.

I can’t remember the last time a friend called me just to chat and check in on me. I can’t remember the last time I sat around a dinner table hanging out with friends, laughing and joking and not having a care in the world at that moment. I can’t remember the last time I knew I was someone’s best friend. I now go weeks without talking to anyone other than professionals related to Brendan Bjorn’s care. And if it wasn’t for the fact that I have an 11 year old son who would see me if something happened to me and be able to call for help, I would end up like one of those tragic stories above.

I don’t write this to gain pity.

I write this to help others gain understanding at just how truly isolated so many carers are in their homes. 

“The hunger to belong is at the heart of our nature. Cut off from others, we atrophy and turn in on ourselves. The sense of belonging is the natural balance of our lives.” – John O’Donohue, Eternal Echoes. 

Personally, I don’t feel a sense of belonging. I don’t have family and a community that I’ve been rooted in for life. I am generally cut off from others, as are many full time carers who are predominately housebound. As described in the quote above by John O’Donohue, I feel like I am atrophying and turning in on myself. Again, it’s isolation. It’s lack of being able to socialise and connect with peers on a regular basis. It’s about not being able to be anything but a carer, yet wanting to be something else, too. It’s about having to leave behind those activities that gave me the outlet to express who I am, to centre myself, and to nurture within me that natural balance that comes with a sense of belonging.

Maybe that’s why I’m no one’s best friend or priority: Because who I am has atrophied to the point that I’m no longer interesting enough to anyone to prompt those calls and invitations, that connection which brings the sense of belonging. I have to wonder.

Carers often lose many other aspects of their lives, except that of being a carer, as each year of caring passes from one to the next. 

I think about those elderly people who lay dead in their homes for months on end, undiscovered, and clearly unmissed. How lonely they must have been. They weren’t anyone else’s priority. It shouldn’t happen. What does it say about society when this happens? And, for those who had family and friends, where were they? Busy with their own lives. I know. I’ve heard it more than once myself.

No one should be left isolated until they no longer feel a sense of belonging. 

 

“Everyone longs for intimacy and dreams of a nest of belonging in which one is embraced, seen, and loved.” – John O’Donohue, Eternal Echoes. 

 

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Brendan Bjorn as he was and as he is.

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It’s been 7 days since Brendan Bjorn got his new custom moulded wheelchair seating after having waited 9 months since his spinal fusion last October 2018. Waiting, in bed, housebound. We have been out a couple of days since he got his seating. The second day we were out, finally getting my haircut and doing a bit of shopping, he became fussy by the end of it. We had been out too long. Just 3 hours – the maximum time length he can be in his chair at this point in his life because he’s grown that fragile. 3 hours.

And while I am truly thankful to have this bit of freedom now, it is just a glimmer of freedom – and it’s a glimmer whose light can be quickly extinguished with one pressure sore opening up, again forcing him to be bedridden.

I’m not being negative. 
I’m being realistic.
It will happen again.

I was chatting on Twitter with a friend of mine yesterday. He said something that has stuck with me. We were actually chatting about the upcoming hurling matches and I sent a couple photos of the boys in Cork gear from the time when we lived down there. It was 10 years ago and Brendan Bjorn was a different boy altogether. The conversation went from hurling with this one short message to me: “I can see the journey you’re on. It’s not just BB as he is, it’s BB as he was.”

Yes. A thousand times, YES!

In that one message, it showed me that someone finally understood how, despite being happy to finally have limited freedom with Brendan Bjorn’s new seating, it is – and always will be – bittersweet because the boy he was is always present in my mind as I watch the boy his is now grow more fragile each year. 

That is something that most people can’t understand. Dare I say, it’s even something that many newer parents on this journey can’t (yet) understand as they are just starting out, still full of hopes that their child will reach milestones; still working with therapists weekly so their child can meet their full potential. And rightly so. They should be.

But you see, I’ve been there with Brendan Bjorn.

The physio twice a week. The OT/speech once a week. The stander daily. The walker – yes, a walker! The special needs bicycle. The AFOs and botox and serial castings. Watching him be able to grab things out of my hand, bring a biscuit to his own mouth, hold his head up for a few minutes at a time. Seeing him accurately trigger BIGmack switches to relay messages. The travel and adventures taken. And so much more. 

But it’s all gone now. That time is past. The hope of milestones and met potential no longer exists. And for me, it hurts like hell to watch my child regress and decline each year despite having worked so hard and having had such faith that the work would make a difference and somehow save my beloved son from the challenging and very restricted life he is now leading.

As I washed his hair tonight, carefully and tenderly holding his head in my left hand as I rinsed with my right hand, it all came rushing at me. The feelings of what it used to be like when he’d lay in his special bathtub laughing, kicking his legs to make the water splash, and laughing with abandon. Yes, beautiful, precious memories I shall treasure as long as I live. But like my friend said about this journey, It’s not just BB as he is, it’s BB as he was. 

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Burnout

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Before I had my sons, I was a professional child and family therapist. During my graduate studies, we often discussed burnout as a therapist and tools to try and avoid it as best as possible. Today, as a full time lone carer to my severely disabled teenage son with profound medical care needs, I am experiencing burnout. 

What are some of the signs of burnout? 

Here’s the way it was described in one recent article in the Irish Times:

  • There is no such thing as a good day
  • You’re constantly exhausted
  • You’ve unexplained aches and pains
  • You’ve lost interest in all the things you used to enjoy
  • You feel helpless, trapped and alone
  • Nothing lifts your spirits
  • Loss of motivation
  • Isolating yourself from others
  • You feel constantly angry, frustrated and resentful
  • The future looks bleak

As I read over that list of warning signs, and tick pretty much every single box – as I’m sure many full time carers can do, too – I feel compelled to write this blog piece as a way to get more conversation started on what can be done to help carers like me continue with the work we do every day.

A recent study by Family Carers Ireland showed the following from their survey:

  • 2/3 feel their health has suffered as a result of being a carer
  • Over 2/3 suffer with physical ill health
  • 1 in 3 have a diagnosis of depression
  • 4 in 10 have a diagnosis of anxiety
  • 71% have no access to respite

There has also been discussion in the press recently of burnout amongst the medical professionals in Ireland due to our failing health system and the appalling shortage of consultants. Last year it was revealed that 1 in 3 hospital doctors experience burnout.

Burnout amongst the caring professions – and I include those of us who are full time family carers of our disabled loved ones – is an extremely serious concern that must be addressed.

Carers like me are the first line of care to keep our fragile children out of hospital. Our work is crucial. We literally keep our child alive with the medical interventions we do.

We are entrusted with complex medical care, often on a 24/7 basis for days, weeks, months on end, which including measuring and administering life saving medications, clearing airways, seizure rescue, monitoring of heart rate and oxygen, care of open wounds, and so much more.

If we burnout, what happens to that intensive, daily care we provide and what happens to the one we are caring for? (please re-read that all-important question)

As with the physicians who are experiencing burnout, there is only one answer to that question: The quality of care ultimately suffers. 

A perfect storm, as it could be called, is brewing in Ireland. One where full time carers like me are burning out and the doctors are also burning out. What saddens (and angers) me most about that fact is not the list of burnout symptoms above which I go through on a daily basis, but knowing that, at the end of the day, it is the patients, the loved ones, the fragile children, whose lives depend on the best care possible to remain healthy and indeed alive, that are most at risk because of burnout.

It is past time that the government listen to all of us crying out for reforms.

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