Before normal walked away

A couple of years ago I wrote this guest piece for popular blogger Retro Mummy.

http://retromummy.com/2012/07/25/tell-me-your-story-julia/

I told the story of the birth of my fourth daughter Georgie, who was found to have Down syndrome at birth.  In it I wrote about the line that I felt was drawn down the centre of my life when we knew she carried an extra copy of Chromosome 21.  That it was a momentous event, with life divided by the days she was born, and the days we lived before her.  In the fraught days that followed, I remember being very haunted by a photo taken a few hours before she was born..me smiling, delighting in the anticipation of the new daughter we were about to meet…in the last hours before normal walked away, and we had to replace it with something new and find our groove again.  We didn’t know if we could at the time, but to our surprise, we thrived.

At the time, I thought you couldn’t draw a deeper line than that.  But just a few years later, I was haunted by another photo:

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I remember the moment so well.  I was trying to get a good photo for our annual Christmas cards.  No one was feeling very patient with me, and this one, with Georgie’s eyes firmly closed, was the best of about 50.  I had a keen interest in photography, and I was trying to get good camera angles, and good light, and I was laughing, and they were laughing, because I kept stepping backwards for a better shot, until I fell into a bush.  We sat there in the sun and ate some fruit, and I remember looking at them and wondering how I had produced something so golden, so beautiful….so very, very hard to ever leave.  I knew that my life could change the next day, as I had a colonoscopy booked that I was starting to realise might turn out badly for me.  It was the last day I had any relationship with carefree, and the last day I ever would again.  Less than 24 hours after this photo was taken, and I sat on the grass having a picnic with my golden girls, I heard the fateful words “I’m sorry, you have cancer”.  And a line was drawn again.  This one was cut into my psyche like a jagged scar.  One that might fade a little with time, but one I knew I could never be rid of for good.

I was surprised to find that you can find a way to live with cancer.  It’s not easy.  In it’s immediate aftermath, especially after a terminal diagnosis, the shock renders you nearly unable to function.  The gut wrenching fear when your mind takes you to places so dark you wonder how people who have gone before you have not gone stark raving mad after they have visited them.  The horror of seeing your husband literally unable to stand, rocking backwards and forwards on the floor, howling, while you stand, as though outside of body, and watch your 7 year old child sit next to him and pat him, and say “it’s ok daddy, mummy will be ok”.  The numb resignation of knowing that one day you have to tell them that a doctor said that mummy can never get better.  One day, but not that day, because that day you are just trying not to die from the sheer heartbreak of it.

You soon learn that grief is unsustainable at this intensity.  I couldn’t have normal anymore, so I learned to cling to the little bits of it that I could.  The days that I was not so sick from chemotherapy and was able to make them a meal and put it on the table.  The days that I was not so weak from low iron counts that I was able to take them out and have some fun, or let them have their little friends over.  Days when we went out as a family, and watched our children run on the beach, or at a playground, and tried not to anticipate how long it would be before we weren’t able to anymore.  Taking as many photos as we could, before I went missing from them.

Today, because of a positive response to treatment, we might find ourselves drawing another line in a few months.  The words “you are in remission” might blur the scar on my psyche that cancer put there….might make the wound a little shallower.  It’s still a good few months away from being possible, but my treating team seem to believe we have a good chance of getting there.  And if so, there will another new normal to find, that will involve living my life, for the rest of my life, in 3 monthly intervals, between scans to see if my cancer has returned.  There is a small chance it won’t, and a big chance it will, and I’ll always know this.  But I’ll also live these intervals with every bit of fervour I can muster, because I had this, and I want this again.  More than I have ever wanted anything, ever:

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And I have to believe I can.

One Comment on “Before normal walked away

  1. Oh Jules. I have photos of the children playing the morning after I found the lump in my breast. I look at them and remember that I had no idea what was to come. I hope the scar on your soul fades with time. It will always be there …… but fainter.

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