Archive for July 2010
Better.

Better than yesterday and the day before
and most definitely the day before that.
Yes.
I can honestly say that.
She walked to the bathroom this morning and stood as the hot spray of the shower cascaded over her shoulders.
She closed her eyes tightly as I washed her hair, washed all the sweat and sickness away.
She closed her eyes and smiled.
Simple pleasures,
my girl is all about the simple pleasures.
Better, despite reacting to the ethanol lock,
used to save the port.
Today she’s been sitting up and colouring in,
she’s interested in her world again
and I can’t ask for more than that.
Shock
How do I describe to you what happened yesterday?
How do I tell you that we could have lost Ivy?
How do I describe my fear?
How do I tell you how amazing all of the other kids were?
Yesterday was a perfectly normal day for us. We had an appointment for the hospital, so I thought we would go via the shopping centre and have all the kids’ hair cut.
I de accessed Ivy, flushing the port and locking it with heparin – she had a normal temperature and was in good spirits
and so we made our way into town.
We were only there for a little while when Ivy complained of a headache.
That’s not unusual for the girl
but when I turned my eyes to her,
she looked sick.
After that everything snowballed.
She complained that her wrists were hurting, her neck was hurting and that her legs hurt too
and then she said that she was going to be sick.
She was looking worse and worse by the minute.
She started screaming at the top of her lungs,
you know that truly inconsolable cry of a child,
high pitched, urgent, painful
and we were causing quite a comotion.
People were stopping to stare but nobody came to help.
When she started to shake uncontrollably,
I picked my baby up and ran.
The kids running behind me.
By the time we reached the car, Ivy was convulsing in my arms,
her face as white as you could imagine, her lips blue,
her skin as cold as ice
and the screaming -
it never stopped
until suddenly it did
and I couldn’t get any response at all.
Imogen called David,
Maddy called my Mum.
AJ organised food for the younger kids and
Lily settled Noah (who was distraught) and Mal into the car
and while Dave was calling the paed we made our way to Accident and Emergency.
By the time we arrived Ivy was no longer cold, she was burning up
and was very very sick.
I can’t do the fear justice.
I can’t describe it adequately,
I can’t write well enough, to paint a picture, to bring you into the fold.
Everyone was clearly shaken and quiet as we waited for a doctor,
waited for my Mum to come and take some of our party to a safe place,
waiting to hear,
to know what had happened.
Lines and bloods and fluids and antibiotics followed
and finally late into the night
the doctor told us it was septic shock.
A septic shower,
caused by an infection in the port.
So, we’re here for seven days at least
while they try to save the line
and while my girl gets better.
I have never been so grateful for our doctors
nor so grateful for my amazing children, my husband, Mum and my family
and tonight,
although she is so very tired and puffy and still aching,
tonight,
it feels like another chance.
Fiji

Fiji.
It would be Fiji.
My warm destination.
My place to escape.
It’s been that way for a while – it’s the place I dream about when things get tough,
when we are in the hospital for weeks on end.
The place I take myself away to when there are blisters and crying and sad things that I don’t deal with well.
When the little girl sobs into my chest because the medication and the pump are too heavy
and the strap from the bag has worn the skin away from the crook between her neck and her shoulder,
when there is unexplained bleeding and everyone feels panicked
and I am physically and emotionally drained,
I can close my eyes and imagine tanned legs and white sand
and the blue green of the ocean.
I can picture her sun kissed curls.
Once I asked Ivy if she had a biggest wish
and, even though I know meeting Snow White is up there and fully expected that,
she said
it was to swim in the sea, without any needles or lines or pumps
and so
when I’m dreaming about Fiji
it always includes her wish too.
When I’m staring down the face of an empty cupboard or a bare fridge,
which I sometimes do,
due to medication costs and the strain of consultation fees, travel costs and the like
I imagine tables groaning with the weight of fruit and meat and all things good to eat
but it’s the constant ebb and flow of the water, the sun setting on cooling sand, the blue, cloudless skies
that really call to me
and if I could I know
that I would pack everyone up
and go
right now.
I would escape and make my imaginings
a reality.
Do you have a place to escape, a place you dream of going?
Inspired by a conversation with bugmum.
The pirate and the fairy.

Noah tells me
he will build things when he grows up.
Build things and then knock them down and then build something bigger and better.
He is all about the bigger and the better.
He always wants to know what makes the world go ’round, his mind a constant ball of enquiry and imagination.
The pirate hat?
He tells me it helps his brain to think.

Ivy just wants to be a fairy mermaid princess
and spread magic throughout the land.
I think she’s got that covered.
(Her only issue lies with the mermaid part – because I’m not a mermaid, I won’t be able to come to the bottom of the ocean to wash her clothes).













