A day of broken angels and an advance directive plan

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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.

The carer’s clipped wings

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A golden eagle soared high over the canyons of red rock and the mountains with pine forests stretching to the sky, her spirit lifting in the breeze.

A parakeet with wings clipped, she battered her body against the confining walls of the cage in a desperate attempt to escape.

The cage door unlocked, she flew to the pine covered mountains and her spirit was unleashed. She caught a glimpse, or a memory, of what it was like to fly high amongst the beauty she knew once upon a time when she was free.

She was returned to her cage, the duty of being bound by wings not allowed to fly.

And now, the cage is even more confining than before, as she yearns to be free once again, to soar with wings unclipped.

Creating too much noise, the cloth was placed over the parakeet’s cage, and in the dark, surrounded by bars, she grew silent as her spirit went back to sleep, dreaming of becoming an eagle once again…

Dreaming of unclipped wings.

10 minutes, 9 years ago, 10 minutes today.

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I was talking to a friend/fellow carer the other day. She understands where I’m at emotionally as a carer. She said something that has stayed with me. She said that whenever she sees me write about being exhausted and wanting to give up as a carer, she thinks of this photo and how once I had – even for those brief 10 minutes – the ear of one of the most powerful men in the world (no comments re: politics, please) and was running a national charity foundation in America.

Now, just 9 years later, I can’t get 10 minutes with anyone who can make a difference here in Ireland and I do nothing other than exist as a carer behind closed doors, unseen, trying to make if from one day to the next working around the clock providing nursing-level care that I know I can’t keep doing on my own for much longer.

So yes, I’ve been thinking a lot about what she said. This journey changes a person in a lot of ways. One of the ways is how we see ourselves as carers. For me, these last number of years have really drained my sense of self-worth, self-confidence, or the feelings of contributing to the greater good that I may have once had; that sense of self and identity which comes with fulfilling work, whatever it may be.

To be left now constantly fighting for the slightest of crumbs and to be heard is soul-destroying. It can also make one question what is their value.

I’m trying to rediscover that sense of self-worth, that confidence in who I am as a person – not just as an invisible, forgotten carer. But, it’s hard…damn hard…when the years have repeatedly brought battles which knock you down time and time again.

Too many politicians feign interest and concern. Frankly, so do many activists who claim to care about human rights. Where are they when it comes to the profoundly disabled and their carers? They are nowhere to be found.

As I sit here tonight waiting for Brendan Bjorn’s feeding pump to finish its course so I can begin his nightly medicines routine, I type this quick blog realising it will likely be read only by those who are also carers. Like many aspects of this journey after 17 years, maybe it’s nearing time for me to stop fighting so hard for politicians to hear our plight in hopes of affecting change. Maybe it’s time to just focus on a new journey to rediscover myself, and indeed to build myself back up as a person outside of my caring role.

Just maybe, it is time.

Perfect timing. Brendan’s feeding pump just began beeping and the caring work continues.

That was a quick 10 minutes.