The morning started off with me discovering the item I had on the wall above the fireplace having fallen in the middle of the night, knocking down the Waterford Crystal piece that was sitting on the mantle, aptly named the “Angel of Hope”. Her hands, which were held outward together, had been broken off in the fall, shattering into countless tiny pieces and unable to be mended.

This afternoon, Brendan Bjorn had his last appointment with his Paediatrician in light of him turning 17 in just two month’s time. We also completed an Advance Directive Plan for him to restrict all medical emergency interventions.

It could be a story from a novel, but it’s not.
It’s simply my life today.
It’s Brendan Bjorn’s life today.

I’m not sure anyone can truly comprehend what this journey is like unless you’ve walked on this very same path. Decisions formalised today have been thought out long and hard, exploring every recess of my mind and heart in an attempt to reach the most reasonable, right, and loving decisions. The reason for an Advance Directive – or at least what is stated on his – is to promote dignity when it is his time to die.

Seeing those words in writing hits straight into my soul. There are no words to adequately describe the emotions felt. Still, I know it’s time to not prolong the many years of constant surgeries and treatments, the frequent illnesses resulting in hospitalisations, the multiple failed IV lines resulting in central lines, the intestinal failures and of course, all of the pain that goes with each challenge. He has been through more medical interventions than the majority of adults I’ve known in my life, and he’s only 16.

He deserves peace and dignity as he lives out the remaining days, months, maybe even years, of his journey, however long it may be.

I’ve often said Brendan Bjorn is the happiest, most loving soul I know, and indeed he is. He is my angel. Our angel. And unlike the Waterford Crystal angel that fell and shattered her outstretched hands, Brendan Bjorn will always be whole in my eyes. He will always be perfectly who he was meant to be, teaching us all of the lessons he is here to teach us. And I have no doubt that in his death some day and when he becomes the angel watching over us, the lessons will still be taught, for that is the gift that my son is to me, to our little family, and to those who choose to see what his journey has so beautifully offered.

It’s been a long, emotionally draining day. I’m exhausted and, truth be told, I wish I could be held in someone’s comforting arms this evening to give me just a moment of tranquillity, forget the day, and like the now-shattered Angel of Hope, provide me with a glimpse of hope.

I look up and see the angel on the mantle, no longer perfect. That’s ok. Her new imperfection will serve as a reminder for the day it is and what it means for this journey.