PART 1: I LEARNED SOMETHING ABOUT MY NERVOUS SYSTEM

Mackenzie vomited in the shower last night. As her entire meal came chundering on to the floor, splattered on to the walls and me, I went to a familiar place in my body and mind.

I’ve caught her vomit in my bare hands more times than I dare to admit. When she was younger I couldn’t go anywhere without a vomit bucket, ‘spew rags’ and several changes of clothes. I'd sit in restaurants, waiting rooms, beside her bed and wait for the anticipated rejection of food from her tiny body.

Last night, as I stood there washing her down as the purge left her Being, I found myself floating back to a place I’ve been to countless times before when she used to vomit up to 10 x day, frequented hospital, assessments, tests and surgeries.

I stood outside the shower getting saturated, caught vomit, washed it away, cleaned her, cleaned the entire bathroom, washed the towels, and proceeded to tidy up the kitchen, the washing, my bathroom and bedroom. 

Autopilot. 

Freeze.

I had a friend staying over and it was only in her presence that I noticed my body and mind drive straight to this space of quiet within myself. Dissociated, numbing out, to a void of nothing. 

And I realised, for the first time, that I went to this place of solitude, frozen, every single time Mackenzie and I were presented with a challenge.

Every time she vomited.

Every time she went to hospital.

Every time she needed her gastrostomy PEG changed (a feeding tube that went straight into an open hole in her stomach).

Every time she needed a test or surgery.

Every time she came out of an anaesthetic daze and got aggressive.

Every time she rebutted against the need to do one more repetition in therapy.

Every time she needed an injection.

Every time I swept the food off the floor she didn’t swallow.

Every time I plunged puréed food into the feeding tube because she didn’t eat.

Every time we pinned her down to take bloods.

Or cast her feet.

Or trial a new piece of equipment.

I did it all.

Alone.

In the quiet of my mind.

And a beating heart.

That was terrified of breaking.

If I allowed myself to feel the magnitude of what lay in my arms.

I wouldn’t have gotten through it.

So I shut myself and everyone out from it. I didn’t share that pain, my fear, or the anguish with anyone. Because it felt like it was mine alone to endure.

But I’ve learnt, over years of self inquiry and therapy, that I was terrified. Triggered by a core wound of being ‘a burden’ I was afraid that if anyone knew how hard it was, how scary, how big, they might not be able to handle the bigness of it all.

Of her diagnosis.

Of her.

Of us.

And they’d leave me. They’d leave us. And I’d have to do it alone anyway.

So I kept it all to myself.

To protect myself from being left alone.

I became the ‘capable one’, ‘resilient one’, the ‘strong one’.

I carried it all myself.

I wore a cape.

And a mask.

I shut up.

And I held it all in the silence of my heart, that whispered words of encouragement. And patted me on the shoulder, acknowledging how hard it was.

I remembered it all last night. 

Mostly I remembered that silence. 

My withdrawal. 

My habit of holding it alone. 

So I wrote this, to share it with you. 

So it wouldn’t be mine to carry alone any longer.