Where the boardwalk ends

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He’s 15 years old and he deserves to be able to see the world around him, even amidst a pandemic. The past week, I’ve seen teenagers up and down our street. Laughing. Carrying their hurley. Coming back from the shop enjoying a 99. There is no social distancing. There is no thought of COVID19.

I remember being that young and thinking I was untouchable. Immortal even. 

Yesterday, for the first time in 2 months, I lifted my fragile son out of his bed and put him into his wheelchair so we could leave our house. I couldn’t take being trapped any longer. Modification works on the house are another thing shot down by COVID19 and it has left me without the overhead hoist system that would have otherwise been in place by now. There’s no telling when it will be done. At the very least, I’m hoping to get the outside works done, but am meeting resistance from the builder. A ramp and paved drive so I could finally take my son out to the back garden would be amazing, but it’s another fight, it would seem.

There we were – me, Declan and Brendan Bjorn – in the van together once again. Joyous!

First stop was at the local shop. I put on my mask and gloves and readied my debit card for touchless payment. Inside, I ended up looking like a rabbit bouncing around trying to avoid everyone shopping as they had no mind to practice any physical distancing whatsoever. It was clearly up to me to protect myself. There was no group effort to be found. 

We drove to a spot next to a river and had a picnic. No, don’t worry, we did not follow the example set by Ireland’s Taoiseach, Leo Varadkar.

We had our picnic in the van. 

It was actually lovely just to get out of the house, see a different sight, open the doors and feel the breeze on our faces, while Declan and I shared some chicken and cheese and then some cheeky biscuits. We just sat there watching the herons and the geese. People walked by us consistently. Traffic was steady. It was like last year…you know, before all of this happened…except it wasn’t. It wasn’t the same for us.

It isn’t the same and we wonder when, if, it will ever be the same for us again. 

We weren’t ready to go home yet, so we took a drive. Now, before anyone says we broke restrictions, you can click on THIS to see how we didn’t. People with disabilities and their carers are allowed to go for a drive beyond their restricted zone. Anyway, off we went, ending up at the beach. I knew it was closed but it was such a beautiful drive and Brendan Bjorn was beaming ear to ear, as was Declan, so how could I go home yet? We were stopped by 2 County Council workers (who kept their distance, thankfully) and I said how I knew it was closed and where we live, I pointed to Brendan Bjorn, and said we were just taking him for a drive.

Pleasantly surprised, we got the green light. He was allowed to enter! 

As we drove to the car park, there were handfuls of people walking to and from it. We parked. I sat there debating whether or not to take him out of the van. I looked at Declan, and his 12 year old, smiling, freckled face looked over at me and I knew he was desperate to get out. OK, let’s go. With that, we unloaded Brendan Bjorn and set off across the car park to the boardwalk that goes up the hill and then slightly back down the other side toward the beach.

White sand and a gently rolling ocean awaited. 

Brendan Bjorn could go no further, which meant I could go no further. We had to stop where the boardwalk ends. I stood there next to my 15 year old son as I watched other teenagers walking along the shoreline, swimming, and lounging in the sun. There was only about 30 to 40 people on the beach – far less than would normally be for a beautifully sunny day – but more than I was comfortable with as they would walk by us with no distancing at all, adults and youth alike. I thought, do they not see my son and realise how vulnerable he is? Do they not take COVID19 seriously? 

Declan had walked down to the ocean. Oh, how he loves the ocean! I stood there, where the boardwalk ends, stroking Brendan Bjorn’s hair…and I cried. My heart ached to be with Declan, to feel the ocean lapping at my legs and the sand between my toes. To smell it and feel it and just be with it. To be with him.

Sometimes, it hits me harder than usual to remember that as Brendan Bjorn’s carer, I too always have to stop where the boardwalk ends. 

I let the tears fall as I watched Declan be happy.
The tears of sadness turned to bittersweet tears.

We only stayed about 20 minutes. The lack of social distancing while people walked past Brendan Bjorn was more than I could handle. As we drove back home, I thought about the requirement for the most vulnerable in society to be the ones to isolate away from the public. And then this morning on Twitter, reading comments on something I had posted, I thought about it again.

It’s now dawned on me that the right to enjoy being outside, to go to the beach and feel the ocean mist on your face, to go to the park and sit in the grass having a picnic with friends, is a privilege given to only some in society: Those who aren’t vulnerable.

Why should the vulnerable always be the ones to hide away?
Does my 15 year old son not have the same right to enjoy the ocean as other teenagers?

What if I said that maybe he and other children with life-limiting conditions should actually have more of a right to see the ocean and be able to enjoy the outdoors?

It’s the majority who always have the rights. The minority in society are often an after-thought. Disability is no different in that regard, is it?

It’s heartbreaking that my son always has to stop where the boardwalk ends. 

 

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Where the boardwalk ends

Ramblings from solitary confinement

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I’m in solitary confinement. At least that’s what it feels like lately. Yes, I thankfully have my two beautiful boys to keep me company, but to be very clear, they are all I have. There are no phone calls coming in from friends, or what little family I have, to see how I’m doing or even just say hello and pass the time. The only phone calls I receive are service or healthcare related for Brendan Bjorn. The last casual call I received was a couple of weeks ago from one of the Spinal Team nurses at Crumlin just to say hello.

I cried after we hung up, I was that moved she rang me. 

Being a lone parent can be challenging in the best of times,
but being a lone parent carer to a medically fragile, profoundly disabled teenager in the midst of a pandemic
is another realm altogether.

While the world is slowly coming out of quarantine from COVID19, some of us remain confined to our home trying to escape the worst fate possible if the virus struck our vulnerable loved one. I sit here, alone in this room of solitary confinement, and wonder – how long can I do this and is this really what I should do? Should we tempt fate and break quarantine? I then wonder if fate is predetermined. If it is, I wish I could know it, no matter how awful it may reveal itself to be, because the waiting, worrying and isolation is wearing on me.

Maybe I should roll the dice when school reopens and send Brendan Bjorn back in, taking the chance of his limited life being even more limited if he was to contract the virus.

Sounds harsh and cold, doesn’t it? That’s our reality.

No one else can answer this question for me. And the powers at be certainly aren’t answering the question as to if it will be safe for children like Brendan Bjorn to return to their special needs schools this Autumn. No one has the answers. There are no guarantees. The decisions are mine to make.

The current advice from the HSE is, and most likely will continue to be until a vaccine is found, that the most at-risk in our society should remain “cocooned”, as they’ve coined the phrase. I’ve used it myself, I must admit. Today I’m using solitary confinement because that’s how it feels. Cocoon gives hope of a beautiful butterfly soon to emerge.

I’m not visualizing any butterflies at the moment. 

Instead, I spend my days providing nursing-level care to my precious son. I’m up at least twice a night with him, too. The past couple of months, I’ve also tried – and failed miserably – to be a teacher to my younger son, Declan, while schools are closed. I take out the bins then bring them back in. I pull the weeds and mow the lawn. I paint the house. I care for the pets. I cook and clean and do endless daily laundry. I hold my son’s hand as seizures suddenly take him to a place only he can go, reminding him that I’m right here. I brush his teeth and wash his body and shave his handsome face. I look out the window and dream about the trip I was to be taking this summer with Declan back to Norway to see our newest baby cousin.

And I lay in bed at the end of a long day wishing my body was 20 years younger so it wouldn’t hurt as much as it does.

I’m ready for freedom from this solitary confinement, but I know that it’s not yet to be. So, those are my days and weeks, waiting and watching, hoping that everyone out there who is free to be back within their world does so responsibly. From the photos I’ve seen on social media the past few days, I have my doubts. What is that they say about youth being wasted on the young?

Just some rambling from solitary confinement. I’ll keep searching for the key to unlock the door and release those butterflies currently still wrapped in their cocoons. 

 

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The most vulnerable in what are certainly uncertain times

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The entire world is in quarantine measures of various stages. It’s as surreal a thought as they come. Some countries are beginning to lift those restrictions – slowly, carefully, uncertain of what will happen as a result. Ireland is at the stage of deciding what to lift, what to re-open, and when.

There are only a few certainties in this very uncertain time: 

  • If restrictions are lifted too soon, we could see another surge of infections which would result in a reintroduction of quarantine measures.
  • Until a vaccine or treatment is developed for SARS-CoV-2 (COVID19), the most at-risk groups will have to continue to quarantine, or as it’s coined here in Ireland, cocoon.

One thing not being openly discussed by Irish officialdom is that the older members of our society are NOT the only high risk group who will also need to continue cocooning. 

There are questions which now need answered:

  1. What of children and adults like my son Brendan Bjorn? Profoundly disabled, incapacitated, medically complex and fragile loved ones who depend upon full time nursing-level care to survive are at great risk from this devastating virus.
  2. How will they be best protected once quarantine is lifted?
  3. How can they be protected in their own home when other family members are no longer in quarantine?
  4. Is it even possible to have one family member back out in society, even in the germ-zone we all know schools to be, coming home daily into the same environment as the family member who is cocooning?
  5. And what of the family carer in this scenario: What are carers to do as they go between family members – cocooning and not – to protect the most vulnerable? What are they to do to protect their own health in this scenariofor if they go down, the entire ship will surely sink. 

The past few weeks have been dark times for many of us. Some of us can thankfully see the light at the end of the tunnel as the talk of lifting restrictions begins.

But for those of us living in the world who are at high risk, nothing will have changed with the lifting of restrictions for society. If fact, we may feel more isolated and forgotten as the world carries on without us while we hide away in our homes, afraid, worried, trying to avoid an invisible foe which could easily take what is most precious to us. Please don’t forget us.

Yes, the above questions must be answered, fully, in detail, and without political spin or condescending vagueness. And once answered, help needs to be given for all members of society.

The most vulnerable must not once again be left on the sacrificial altar. 

 

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The disabled, their family carers and COVID19 in Ireland

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I mowed around the bright yellow flowers in my back garden yesterday. I’ll be helping the bees, was my first thought. My second thought was my father’s voice transporting me back to my 5 year old self. “Why are you pulling the flowers, Dad? They’re so pretty!” The annoyed voice replied telling me how they were weeds that didn’t belong in the lawn. More were ripped out as his sweat dripped down upon them.

I continued to mow around the bright yellow flowers in my back garden. Who’s to say they’re weeds, I then thought. Are they still not a lovely flower that brings beauty to a world which so often has too little?

I looked in the window to check on my precious son laying in his bed. His smile beamed up at me as I waved at him. A beautiful, bright flower in a world which would often consider him of lesser importance than the familiar green lawns finely manicured to perfection.

And then I wondered: Would my own dad consider this grandson, whom he never got to meet, as a weed to be discarded as other family members have suggested, or would he see him as I do, as a happy blossom of love and light?

I went back to finish mowing the back garden, more determined than ever to fight for the dandelions of this world. 

In this surreal and challenging time as the world tries to make its way though a pandemic, historically marginalised communities such as the disabled in our society are continuing to be ignored. What’s so pressing about it now is that it’s an urgent matter of life or death as the needs of the disabled community in residential care homes are being overlooked.

In Ireland, dozens of people in disability care homes are now infected with COVID19. As of last night’s (14 April 2020) Department of Health briefing, no figures were available on if any of those precious souls have died.

There should be data.
If there isn’t, why isn’t there?
If there is, why isn’t it being released?

There should have been a care plan in place weeks ago for any of our disabled members of society and for their family carers should they contract COVID19. There wasn’t. 

My son lives at home with me, but so many other people’s disabled sons and daughters, brothers and sisters, don’t. These residential care homes are just that – homes. We should all be completely safe in our own homes. Disabled people – more vulnerable to the adverse affects of COVID19 than the majority of the population – in these settings aren’t as safe as my son is in our own private home…

…and that is a fact I can’t ignore. I hope you, kind reader, won’t ignore it either.

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Mother’s Day during the COVID19 pandemic

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It certainly is a Mother’s Day like none of us could have ever predicted. For me, I’m spending it trying to avoid my two sons. No, this is certainly not how I expected Mother’s Day to unfold. I’m sick and awaiting testing to discover if I have contracted COVID19.

On March 18th, I rang my GP with my symptoms and was then referred for testing. Now 5 days later, I’m still waiting to hear when I’ll be tested.

Until I know if I have COVID19, I need to self-isolate – something which is impossible to do as a lone parent carer of a disabled child. So, until I know one way or the other, and since I can’t self-isolate, I’m limiting my time with both of the boys – something that is tearing me up as a mother and is particularly difficult for my youngest son who wants nothing more than to snuggle with me on the couch and watch a film together.

On March 18th, it was also the 30th anniversary of my mother’s death. Now 5 days later, missing my own mom hits me hard as I can’t spend the time I want with my own children while I await that test.

Until I know if I have COVID19, I feel like I’m walking on hopes of a future as fragile as egg shells, wondering if I’ll have another 30 years with Declan; wondering if I actually do have COVID19, and wondering if have I done enough to spare Brendan Bjorn from contracting it, too, knowing such a deadly virus would be more than his fragile body could fight off.

Yes, it’s a Mother’s Day unlike any other for all of us. We just need to keep holding out hope for next Mother’s Day that we will still have all of those around us whom we love more than life itself. For me, it’s my two precious sons…those two sons down the hallway, isolated in their own rooms.

Stay well. Stay safe. Stay Home.

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Life in the midst of the COVID19 pandemic

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Brendan Bjorn, Declan and I are on lock down in our home. The last thing I ever imagined I’d be writing about is a pandemic, but here I sit, isolated in an attempt to avoid contracting this deadly virus which would certainly kill my first born son and which would leave my own fate in question with the underlying health condition of an auto-immune disease.

Here the entire world is: trying to live life in the midst of the COVID19 pandemic. 

My youngest son Declan (11) is terrified right now. I want to tell you all why. The below photo is from 2013. Brendan Bjorn was in hospital with severe bilateral pneumonia. He nearly died. The doctors even pulled me aside at one point to say they didn’t know what else to do. All 3 of us had it. Declan and I stayed in Brendan Bjorn’s hospital room by his side.

I signed a DNR – Do Not Resuscitate order – for Brendan Bjorn.

Thankfully, a couple days later, they discovered it was mycoplasma pneumoniae bacteria so changed the regimen of antibiotics. 7 years later, here we are now facing COVID19, which causes a severe pneumonia that would undoubtedly kill my precious son. I’ll emphasis here that mycoplasma pneumonia is often referred to as “walking pneumonia” because it is so often mild enough that the infected person can still be active. COVID19 is not so kind.

Declan understands this risk like most other kids his age wouldn’t.

He’s lived it.
He’s seen it.

He has grown up with the knowledge that another virus, cytomegalovirus, is what devastated his big brother’s brain in utero…and he knows that one of the many consequences from that congenital infection will also one day be what takes his brother from him.

So yes, Declan is terrified right now. I am terrified.

I’m telling you all of this to beg those of you not taking this virus seriously, to please, PLEASE, do!

Don’t hesitate to ring your GP if you feel unwell.
Practice social distancing measures.
Stay home!
Wash hands thoroughly and often.
Don’t touch your face.
Cover your cough and sneeze.
Stay home!

You may be young and healthy, but you are not immune. No one is immune. And you can unknowingly carry the virus to other people. So please, remember those people – your loved ones – who this new virus would certainly kill. Please.

May all of you reading this be well.

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2013

COVID-19 and Cytomegalovirus (CMV): The decisions both viruses have left me to make

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As I write this, 9 March 2020, there are now 3 cases of community transmissions of COVID-19 in Ireland. Community transmission means that the person contracted the virus from an unknown source or person. This number will surely rise, and if the latest predictions are accurate, it will rise exponentially. We are a small island country with a shattered health service. If we get as many cases as predicted, we won’t be able to cope.

The government’s official response to the rightly-worried public is to repeat the message about washing hands thoroughly and frequently. While that is definitely great advice which should be followed (so please do!), it is not enough. Let me tell you why…

16 years ago I was thrown kicking and screaming and crying into the world of virology. I didn’t know it would happen. I certainly didn’t want it to happen. But, it happened all the same: Despite all my frequent hand washing. Despite constantly spraying disinfectant on the toys in my office as a Child and Family Therapist at a public mental health center. Despite not actually sitting on the toilet we therapists shared with the clients. Despite using paper towels to turn off the tap.

Despite all of my best efforts to remain healthy and not pick up any germs while I was pregnant, I picked up a common virus, CMV, – somewhere in the community – which then ravaged my developing son’s brain in utero and changed our lives forever. 

I learned everything I could about Cytomegalovirus (CMV) and a couple of years after my son was born, I phoned one of the world’s leading experts on CMV. We spent over an hour on that first phone call, the result of which was my establishing the first non-profit foundation ever dedicated to raising awareness of CMV and to support CMV vaccine research. I spent a decade at that work along side our Board of Directors, who were some of the most knowledgeable CMV and virology experts you could find. I learned all about IgG, IgM, latency, reinfection, reactivation, different strains, vaccine trial protocol, hygienic protocol, transmission methods…and so much more that frankly I wish to God I never had to learn about, but did.

Fast forward to today. Down the hall from me sleeps my teenage son. My handsome, wonderful, full of love and joy, profoundly disabled, medically fragile and complex son who is at great risk if he should contract COVID-19. Brendan Bjorn would not survive this new virus. After 16 years on this very challenging journey with my son, that is something I can say with certainty. He is far too fragile to fight a virus such as COVID-19.

Decisions to make.

It was easy for me to decide to take Brendan Bjorn out of school while Ireland, and indeed the world, watch to see how this epidemic (ok, it’s a pandemic as far as I’m concerned) unfolds. What isn’t so easy is the decision to take my other son out of school during this time and to have him do his school work at home. For now, though, that is my decision. Even just last week, Declan came home from school having picked up a cold. And yes, despite my constant hand washing and cleaning and keeping my distance, I still contracted the cold from him. Then Brendan Bjorn picked it up and the poor guy just can’t even handle a cold well. He’s still not over it fully.

So, decision made. All I had to do was imagine that cold was COVID-19.

I will end this piece by talking about guilt. Yeah, you heard me right, guilt. Among other things, one lesson I learned by my years of working with CMV-affected families across the world is that so many mothers felt guilt at having contracted a virus which adversely affected their unborn baby. The fact that we all contracted CMV unknowingly didn’t matter: a mother’s guilt at not protecting her unborn child is a real and powerful thing. 

I want to say this: There will be people who unknowingly transmit COVID-19 to a vulnerable loved one despite all of their best efforts. This is unfortunately the insidious and as I say, cruel, nature of viruses. Please don’t feel guilty. Please don’t blame yourself or anyone else. Trust me when I say that feelings of guilt and blame get you nowhere in this regard. Just do your very best to protect yourself from contracting the virus and keeping your loved ones, especially those most at risk like my son is, safe and hopefully those best efforts will pay off. Know that you did everything within your power.

And it is with that thought in mind I am going to do everything within my power to protect my son Brendan Bjorn. So a note to the doctors out there who may be downplaying the virus and fears of the people: Stop it. In many regards, you haven’t a clue.

( Learn more about COVID-19 here: https://www.who.int/emergencies/diseases/novel-coronavirus-2019 )

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