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.

Let me tell you all a brief story.

In 2004, after 4 miscarriages, I gave birth to a healthy son. Within 4 weeks, my world came crashing down with a diagnosis of congenital Cytomegalovirus (CMV). After I picked myself up off the floor, I researched CMV. I rang my OB/GYN and asked why he hadn’t warned me about CMV, especially considering he knew I worked with very young children (the primary infectors of CMV, as you know) as a Child and Family Therapist in a public mental health clinic. His reply will never, ever, leave my mind. He said:

“But you would have had to live in a bubble for 9 months, Tracy, to avoid that virus.”

My reply?

“It is my choice whether or not to live in a bubble, but by not telling me the information you had, you robbed me of that choice, of the ability to protect my son.” 

3 years later, in 2009, I stood before an auditorium of experts, just as you are, and gave a presentation on opening day at an international CMV conference at the CDC in Atlanta. Afterwards, a number of them approached me – some even with tears in their eyes – apologising for my doctor having not warned me about CMV and for him telling me I would have had to live in a bubble. One of the Virologists even went on to reference what I said in his address to his fellow colleagues. What I said had a genuine impact on them.

I tell you this because I hope those words will impact you all, too.

Here we are in 2020 and I’m saying the same thing now with this virus. I’m not asking you to make my decisions for me. I’m an intelligent woman who can make my own, but I want to make informed, educated decisions. To do that, I – and other families in this situation – need to be given specific information. We don’t know what we don’t know, if that makes sense. Surely, you all know more than we do about this virus.

Think of me as your sister; my sons as your nephews.
What would you tell me then?

You undoubtedly wouldn’t tell your sister what to do, but you would answer her questions, providing her with the latest information you have on SARS-CoV-2, so that she could make the best, most informed and educated decision possible when it came to protecting herself and your nephew who is at very high risk of serious consequences if he contracted COVID19.

Would you tell her you see no problem with your younger, healthy nephew spending all day in secondary school, with no masks, and only 1 metre social distancing, and then coming home to her (with an auto-immune disease) and your other nephew who is profoundly disabled with very complex medical needs and vulnerabilities? Or would you tell her otherwise?

Would you tell her you see no problem with her sending that nephew to secondary school on a bus with no social distancing considering the vulnerable family members he’ll come home to? Or would you tell her otherwise?

What would you say to her, knowing what you know?

This is where I…we…need you to step in and say what you would tell your own family member in our situation. Please.