Today marks two years since losing my first-born son, Brendan Bjørn. I was blessed with him for 17 years, 7 months, and 17 days. He died on the 17th of May 2022, after having slowly declined over a few months, his gut unable to absorb the special peg-fed formula which had previously sustained him. He wasted away (what an awful expression, but I’m at a loss for other words to describe it so accurately) in front of my very eyes. Simply put, it was horrifying. I couldn’t change what was happening. I had no control. The child I had fought year after year to keep healthy and alive was dying, and I could not make him better this time. I couldn’t control it. I couldn’t change it.

I could not stop it.

I’ve not been the same person since. Two years on, and I know that I will never be the same person I was before he died.

I’m still trying to pick myself up off of the proverbial floor.
Some people understand this fact.
Other people seem to be indifferent to, or unaccepting of, this fact as they haven’t walked in these painful shoes.

I wish I could adequately explain to you all just how fragile life truly is in a way that would shake your soul as impactfully as losing your child teaches you. That kind of way that isn’t just a surface cognition of the importance of life, but the deepest, most primal realisation that embeds in your very core, flying through every part of your cellular make up. Yes, the spiritual awakening or realisation that ironically, painfully, also destroys a part of your spirit when you are holding your dying child as they gasp for their last breaths is that deep.

I wouldn’t wish this experience on my worst enemy, but the understanding of the fragility of life, well, that I would wish on the world. Maybe then the world would be a far better place.

I was watching a show last night and there was a line delivered by one of the characters that resonated with me. I played it over again. I soaked it in and said to myself, yes…this. The character was talking to someone shortly after losing the man she loved. She said: “How careful we’d be if we [knew] which goodbyes were our last.”

Yes…this.

The difference when you’re the parent of a very medically-fragile, profoundly disabled, life-limited child, is that you already KNOW to be careful in that regard. You know in your heart that every goodbye, every goodnight kiss, could be the last. Even so, when that time does come for it to be the last goodnight kiss, the last goodbye, the pain isn’t any less than if you didn’t know it was going to happen. I actually wonder now, is the pain even greater because for so many years, parents like me on this journey worked day after day, year after year, desperately trying to keep our precious child alive; to put off that last goodbye or last goodnight kiss?

Two years on and I still ache to give him one more goodnight kiss on his tremendously soft cheek. I close my eyes and I can feel his face in my hands. I see his blue eyes beaming up at me, just as they did for over 17 years. I can feel his thick, brown hair as I run my fingers through it, and I can hear his laughter. It’s when I open my eyes to the reality of the day that the wave of grief crashes down to drown my moment of peaceful memories.

Today, I will take many moments to close my eyes and once again feel my beautiful angel Brendan Bjørn. And when I do open my eyes, I will look at my younger son, Declan, with so much love and admiration. This journey with Brendan Bjørn wasn’t just mine. It was his, too, and that cannot be forgotten. He was right there with me 2 years ago today, holding his big brother’s hand while I held the other. He was there comforting him, loving him, and talking to him as his only brother left this world. Indeed, the future journey is now for him. I’m just fortunate enough to have been along for the walk with them both.