One in seven billion


 

Twenty one years, eleven months and two weeks ago my Mum bought me into this world.
Eight years and three months ago, I became seriously unwell with an incurable genetic Connective Tissue Disorder.
Eleven months ago my Mum became critically ill with the only known case of Oestrogen induced anaphylaxis in the world.
Two months ago my Mum was fighting for life on a ventilator.
Today we went shopping.
Tomorrow is Mother’s day.

This blog is for my hero.
This is for my Mum.

Jess xxxxxxxxx

 

……………………………………………………………………….

 

“For a star to be born, there is one thing that must happen: a gaseous nebula must collapse.

So collapse. 
Crumble.
This is not your destruction.

This is your birth.”

Author unknown

 chromosome art

Dear Mum,

You would have taken the fall for me. This I know to be as true as the sick in my belly and the swell in my heart. A few nights ago you asked me how many chromosomes a child receives from each parent. In your eyes I will always be a nurse, the most profound of gifts you could ever lay in my lap.

It wasn’t your fault Mum.

Your reply was as silent as my own assurance.

But it could have been.

And you went back to drinking wine, and I went back to pretending to drink wine, and we planned my future trysts with the spark that only Irish barmen could convey, and lulled ourselves into the parallel universe in which we had found ourselves at home.

gfa

The first day could have been yesterday. Or perhaps it could have been eight years ago. Regardless, what was done was done. I remember crying to you, still a child in every sense of the word. I didn’t know that morning I would be thrust into the land of the adult, and you would be knocked entirely off your own axis.

Mum. I can’t walk.

What do you mean you can’t walk?

And so it was.

I would have taken the fall for you. This you know to be as true as the ventilator gurgling in the recesses of your throat and the ache in your soul. As you headed out the door, proud in the way that only a new coat can bring, I called out. My eyes never left the screen, and my fingers continued to fritter away the hours.

 ‘How many EpiPens do you have Mum?’

‘It’s okay Jess’

And I returned to invest energy I could never afford in to pretending to write assignments, you told me you loved me, and you returned to pretending to gather wood with Dad using strength that has long been laid to rest.

cub loves shebear

The first day could have been yesterday. Or perhaps it could have been twelve months ago. History has a funny way of repeating itself. Regardless, what was done was done. I was still a child in every sense of the word. You were the parent, I was the child. And as you reached for the dishwasher I found myself gurgling in the unfamiliar tangle of role reversal.

Jess, I cant breathe.

What do you mean you can’t breathe?

And so it was.

I was angry with you, and you were even angrier with me. Most of all, we were angry with ourselves. You weren’t supposed to get sick, but then again nor was I. This happened to other people, other families in other lands and other stories. It was their pain to hold, their ache to feel, their tears to drain in the recess of the shower. We were good people. Lightning didn’t strike good people. It never struck twice.

Only, it did. And we could weep, we could grab onto our own flesh and scream. It wouldn’t make a difference. But we did it all the same.

tablet tea

I don’t have any friend’s left.

No one even visits.

I’m just so fucking tired.

I just want a break, just for one fucking day.

I don’t think I can have babies.

My ovaries are going to kill me.

I was never a dancer, and you fondly remind me of it when I try to pretend that failure of flesh was the catalyst for change. You were different. You wore a Miss Australia competitor sash after all, one doesn’t play hanger without having some sense of tightrope. But in this new land we each had to match the steps of a new dance. It was unpredictable, chaotic and desperately lonely. I stepped on your toes more than once, though I was loathe to admit it. You didn’t fare much better.

I’m in pain.

Yeah, well so am I.

But when it came down to it, under the lonely cover of darkness, we moved seamlessly. There were the days you found me sobbing into my shirt on the dog bed. You never raised an eyebrow, and instead took me in your arms. There were the days that I found you sobbing into the Tupperware cupboard, and I never said a word. Instead I reached for the kettle and danced around the missing lids, and together we sat in silence.

me and she bear

It wasn’t all hurt. There were the tram trials and the way we held our heads high as we dangled bags over our arms through David Jones, and stopped to admire boots that were worth more than my car, and we feigned interest all the same. The movies downloaded and the wine and the tea and the forbidden Cadbury inhaled inbetween.

I held your hand in the Intensive Care Unit and watched with terror as they prepared the Endotracheal tube, the ambubag, the ventilator. Each time as another Intensivist surrounded your bed side you squeezed my hand a little harder. You winked.

You were dying, and you were setting me up.

As they told me to say goodbye I started sobbing hysterically and with your last pocket of air you gasped to Dad. ‘Look after her. Look after her’. I will never forgive them for dragging me away, sobbing and I will forever be grateful that they did, so that this blog can have the ending that it does.

Lightning isn’t supposed to strike twice. But it does, and it did. And just as sure as I will continue to fight this until the day that I leave this earth, so too will you.

We can’t die yet. We’re too wicked to be allowed in yet!

 You will fight for me, and I will fight for you.

Most of all though, you will just be my Mum, and I will just be your daughter.

And now I have proof of what I already knew;

You really are one in seven billion.

me and she bear 2

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2 thoughts on “One in seven billion

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