In advance of Children’s Hospice Week 2021: The hard talk.

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Children’s Hospice Week starts next Monday. I’m fast approaching 17 years on this journey with my profoundly disabled son with a life-limiting condition. If you had asked me even a few years ago would Brendan Bjorn still be with us, I would likely have said I seriously doubt it. But remarkably, thankfully, his time with us is not yet over.

Just this morning, I was awakened to him vomiting. His digestive system continues to decline and he grows less able to handle the mere 45 mls of formula per hour that he receives. He needs vented via his PEG more often now throughout the day, even with a Farrell Valve bag attached to his feeding system. (see photo attached to this blog piece for an idea of just how little that is: about 2 swallows to you or me. I normally attach a photo of him smiling, looking the picture of health, but this piece is about hospice; about being life-limited; about dying).

This is part of our journey, his path, my path.

I’ve grown more philosophical – and more realistic – over these past 17 years and as such this blog piece may very well be too hard of a read for parents just starting out on this journey. That’s ok. I don’t think that 12 years ago, when my son was just 5 years old, that I could have read what I am now about to write.

But yes, I’ve grown more philosophical. Maybe it’s better described as having gained some transcendent level of acceptance that my first born child, my beautiful, precious son, will in fact die far too soon. At this point of the journey, I accept it, for this is the reality. I could even say that I am at peace with it (that takes years, by the way) as I believe he will transition to a far better place than where he is now. I don’t know what it will look like, and I don’t think anyone really does, but my faith in our souls carrying on beyond the bodies we are now is firmly resolved.

And so, I accept what will come. The reality is my son will die before the natural order of what life should be.

On this journey, most parents like me meet many other parents walking the same road and with that comes watching some of them lose their child before it is our turn to face that painful reality. I’ve seen so many of my friends go through this loss. I’ve watched – and felt – the rollercoaster of emotions in the weeks, months and years afterwards. The opportunity to once again live a life free of the overwhelming responsibilities caring 24/7 for a profoundly disabled, fragile, child. (Note: I recognise that may sound cold or detached. It really isn’t. It is simply where, after 17 years, I am at in my own personal journey with my son). I have seen my friends move from finding that freedom and spontaneous nature in life again to the next day being on the floor begging for just one more day with their child.

And I have no doubt at all that I too will be on that rollercoaster once the time comes.

Children’s Hospice Week. We can’t talk about the upcoming week and this journey without talking about death. It’s a topic we all try to avoid. I don’t think we should, especially not this week. It is with talking about the fact that our child will die too soon that we can begin to genuinely let go of the fear surrounding that inevitable event. In releasing that fear we can more easily find the peace that comes in accepting this journey and embrace the lessons for us and those around us.

I have long said that the greatest lesson Brendan Bjorn has taught me is that of unconditional love. I now amend what I said and will say this instead:

To be able to truly feel and embody unconditional love for a child you know will one day die, but to reach a place of experiencing that all too rare of unconditional love without any fear of that certain loss, that is the greatest lesson – and gift – he could have ever given to me.

I am no longer afraid of that day, whenever it comes. I just hope, more than anything, to be by his side, holding him in my arms, stroking his lovely, thick hair as he likes me to do, so I can whisper just one more time in his ear how very thankful I am to have him as my son and how my love for him will never, ever die.

45 mls of formula per hour

One thought on “In advance of Children’s Hospice Week 2021: The hard talk.

  1. Sean Andrews

    A sad and deeply moving piece of writing. You have a lot of courage to write like this. As you are probably aware, we lost our profoundly disabled son Rónán at the age of 26 and we knew many months in advance what was coming. We just had to take things one day at a time and, like you, deal with the complex feelings as best we could.

    Like

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