because I just don’t know


I don’t know what else to do but write. So, here I am. I will write to release these parts of my heart that are breaking.

The past few days, Brendan Bjorn has been extremely unwell. His feeding intolerance (gut absorption issue) has suddenly taken a quick turn. He’s barely tolerating Dioralyte, let alone any formula. He’s becoming dehydrated. I’m attempting to increase the rate of Dioralyte, per the Paediatrician’s instructions. He’s been grinding his teeth all morning. That’s his way of telling me he is uncomfortable or hurting which means the increase isn’t being taken easily.

I gave him a bed bath.
I wondered if it was the last one I’d ever give him.
I gave him a shave this morning.
I wondered if it was the last one I’d ever give him.
I trimmed his nails this morning.
I wondered if it was the last time I’d ever do that for him.

He smiled at me first thing this morning.
It was the first smile I’ve seen in three days.
He hasn’t smiled again today, not even as he always does during a bed bath.
And now I wonder if that was the last smile he’d ever give me.

I want to scream right off of this page: DO YOU UNDERSTAND HOW THIS FEELS?!

He’s not ill. He’s palliative. He’s declining.
I think he’s dying.
Slowly or quickly, I don’t know. I can’t know. I don’t think I want to know. I just don’t know. All I know is that my heart is being torn to shreds as I watch this, helplessly, and alone. I feel like I can’t breathe. I feel like I’m fighting an invisible foe a hundred times my size. Sometimes I can’t stop sobbing. Other times I’m completely numb.

Maybe, just maybe, he’ll come through this.
Maybe this isn’t THAT time.
Maybe, just maybe, but then why isn’t the light that is always beaming from his eyes there now? I can only catch glimpses of it, like when he smiled at me this morning. For nearly 18 years I’ve lived for that pure, radiating, beautiful light.

What will I do if that light goes out?

Brendan Bjorn, 7 April 2022

7 thoughts on “because I just don’t know

  1. Mary Foley

    Dear Tracy, I feel your scream. I do not understand how it feels. Losing parents, husbands and very dear friends doesn’t come close. Though I sat and watched helplessly while life seemed to extinguish itself, sometimes in minutes, sometimes in months, I can not imagine the compounded grief of losing a child. I also know the small but valid comfort of providing the best care I could for the most vulnerable. You are a good mother. Nothing is more important. I hope you find comfort in cherished memories, even the last smile.
    Holding you in the light.

  2. Patrick Gates

    What an amazing woman, mother and friend you are to Brendan Bjorn. How can I feel you breaking heart or your loneliness. I have read your words which have made me cry. How useless am I

  3. iona phillips

    I pray if it is his time he will pass peacefully for you. One more smile would make such a wonderful memory.

  4. I’m so sad to read this Tracey for Brendan , for you , is brother, what’s saddest for me is that you all appear to be so unsupported , left worried/wonderingduring this uncertain time in terms of medical support/advice / reassurance. Hoping you are all not nativgating this practically & mentally on your own. A prayer & sincere hope that Brendans beautiful spirit & strenght brings him through ..

  5. Eileen Ferry

    I know how you feel. My sister was exactly the same at the end. She wasn’t as disabled all her life, but her health n body deteriorated as years went by. She lived till she was 82 but was only tube fed the last 2 years. It was still so traumatic but you get through because you have no regrets… you did your utmost best. With God’s help you might get a surprise n he will recover. My sister gave me so many frights but she
    would pull through n give that great big smile. Hoping that is what happens to you too Tracy.

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