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.

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.

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.

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.