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.