Today marks 6 weeks since I helped lift my precious teenage son’s lifeless body into his coffin to be taken to the funeral home. I can still see and feel everything about that moment. What a horrific thing it is to see your own child in a coffin.

If you never have, I hope you never do.

6 weeks ago, I then stood at the front of the house watching as the hearse carrying my beloved boy pulled out of our drive. It’s surreal while simultaneously being devastatingly all too real. A crushing pain I will never forget.

If you have never felt this pain, I hope you never do.

The cruelty of such memories won’t go away. I want desperately to forget these memories. At times, they keep me awake at night, even after 6 weeks. They flash into my mind at random times during random days, as well. I know this is part of the grieving process…I know…I know.

6 weeks on and I am finding a few more moments of laughter, especially with my younger son, Declan, than I did even a week ago. How very blessed I am to have him as my son! He’s been my rock at times. He’s been the soft shoulder to cry on. He’s been – as he always has had to be on this special journey – advanced beyond his years. He misses his brother terribly and we talk freely about our feelings. We share the memories. We shed the tears when they come.

6 weeks on and I know that I must begin looking at our future.

I will never be whole again. I will never be the same person I was before losing Brendan Bjorn. But what I am now, and however much of me remains now, it is Declan who will be at the heart of all my decisions from this point forward. His needs, wants, dreams, and goals. What is best for him. Where is best for him. Everything will be for him.

6 weeks on and yes, I am still spinning. I am still lost. And I’ve lost so incredibly much that I know it will take quite some time to be able to simply refocus and stand up without falling flat on my face.

But I can now at least see that the dial on life’s compass points directly and solely at Declan.

I have to think that it’s Brendan Bjorn holding that compass now, and it’s him who will be keeping us on the right path as he watches over us every step of the way. The incredibly deep, special love the two of them shared is the true north on our compass.

May we always make Brendan Bjorn smile down on us in joy.

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.

It’s been 4 weeks today since I lost my beautiful Brendan Bjorn. I don’t know where the time has gone. The weeks have been lost in the fog that I find myself walking through most days.

Yesterday, they (HSE equipment stores) came to take away my son’s special medical bed, his custom wheelchair, and all his unused supplies. The pick up of the items had been postponed from last week. Maybe that’s the way it was meant to be, because as it turns out, I needed more time seeing those memories in a tangible way.

I had requested they come collect the items because I remember all too well the months on end Brendan Bjorn waited for each piece of special equipment. The man who came to collect the items had been here before to move Brendan Bjorn’s bed while home modifications were about to begin, and then he returned when they were completed. I was glad to see it was him drive up in the truck yesterday to collect those items I had just spent over an hour sobbing on.

I held the headrest of the wheelchair as I cried, visualising my precious boy sitting in it as he did countless times, laughing, eyes beaming with love, as he enjoyed being taken for a stroll amongst the trees.

I laid my head on his bed, right where he had last lay his head, and I sobbed. Uncontrollably so. That wave of grief took hold to the point I could barely breathe, coughing with my asthma triggered.

As the bed was being dismantled, the man from the HSE walked back into Brendan Bjorn’s room and found me staring at what remained of it. He came up to me and, looking me in the eye, and said, “They are just tools he used. They aren’t him, his spirit.” Then he told me a story about an old stubborn farmer who didn’t want to accept that he needed a medical bed. He refused it, the wife told him at the door. So, this wonderful HSE man had a chat with him, similar to what he had with me yesterday, explaining that the bed is just a tool to use, it isn’t the person.

And it made all the difference.
I’m so thankful it was he who came to collect those items.

Brendan Bjorn’s room is achingly empty now. I know at some point I will need to go through everything else. His clothes, the remaining medical supplies on his bedside table, the DVDs he so loved to watch. But now is not the time for that. I’m not ready. Yesterday was physically and emotionally taxing on me with all the heavy crying and I find myself in pain this morning.

This is another day on the path of grieving. The waves will come, and they will go. They come out of nowhere, and sometimes they leave just as quickly.

What will never leave is my indescribable love for my first born son, my Brendan Bjorn. My angel.