Seventeen years. Seven months. Seventeen days. That’s how long I worked providing nursing level care to my profoundly disabled son, Brendan Bjorn. Think about just how long that is and what a huge part of someone’s life that is. Then think about how incredibly difficult it is to try and transition into a life without that role, a role which was literally 24/7, always on call when not actually hands on, in just a matter of weeks.

Think about that for a minute. If that was you, how hard would it be for you?

Now add in the all too painful of a fact that this huge part of someone’s life doing this 24/7 nursing level caring work was for their very own child. A child they carried within their own body, gave birth to, and loved more than life itself. A child they would have given their own life to save, if only they could have. A child they fought so desperately for year after year after year. A child who was the centre of their world for so very long. 17 1/2 years long.

Think about that for a minute. If that was you, how would it make you feel?

It’s been 4 1/2 weeks of my life being turned upside down and my heart being ripped apart since losing my beautiful son. One thing I’m discovering is that people, although well-meaning, don’t really understand what this level of caring and this level of loss is like, unless they have been on this particular journey. This length of time, with the level of intensive care given, and it being one’s own child, is something I dare say most people can’t comprehend, even if they’ve experienced loss or been a carer for a few years. For example, I’ve lost both parents. I helped care for my mother when she got cancer and was dying. It doesn’t even compare, at least not for me.

Seventeen years. Seven months. Seventeen days. My beloved, precious child.

It’s been 4 1/2 weeks. How do I magically become OK enough to find paid employment after all of these years? How do I magically not burst into tears at a mere fleeting thought of those last minutes of his life as he gasped for air? How do I magically make my aching 56 year old body, which has taken a beating and been neglected all of these years of caring, be able to even go through the day without needing to lay down? How do I magically keep the anxiety and depression at bay so the horrific thoughts don’t come streaming in any unexpected moment of the day?

I don’t know how.

Full time, long term carers (let’s say over a dozen years to be long term) like me just can’t immediately pick up where we left off our lives before we became a carer, especially in the midst of such devastating grief.

I wish the world could walk in our shoes for a day and then maybe true understanding would occur. Maybe then, empathy would grow to the point of being followed by proper, longer term supports to help carers (I suppose I’m a former carer now) as they grieve such a devastating loss after having worked unpaid for so incredibly long.

I know I’m rambling. This is my mind lately. All I know is that I want him back. Brendan Bjorn.