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Archive for March 2011

Missing

I miss my kids.

I miss their noise and the life that flows through our home.

I miss that.

I miss lying in bed with Dave and being squashed in the middle,

A five year old boy and girl on either end -

her curled neatly into the fetal position, the morning sun catching in her curls

he spreadeagled, regaling us with stories about cars and tow trucks.

I miss knowing that a nurse is not going to come through our bedroom door

to add another medication into a drip that wasn’t there a week ago.

I miss seeing Ivy smile

not those little half smiles that she pulls

because she thinks it’s what I want to see.

A real smile.

I miss hearing her bossing Noah around

and the push and pull of their kinship.

I miss hearing her giggle.

Here, she only seems like a half self.

Her eyes are cautious, not wrinkled at the sides with laughter.

Her mouth held tightly, in strength as much as in weakness.

I miss having the freedom to choose.

I mean really choose.

Here my choices include whether to risk a little life

one way

or another.

Whether to fight

or concede.

I just don’t want those kind of choices.

I miss feeling certain.

Living in fear is no way to live at all.

It’s exhausting

and terrifying.

I miss feeling happy.

In here it’s a mixture of confusion and anger and sadness.

In here nothing seems right

and yes, I will admit that

it feels as though the colour has drained from our world

and everything is washed in different shades of grey.

It’s hard to remain positive some days.

This morning I wondered if I could just disappear.

Take the girl.

Take the risk.

Walk away,

just go missing

but that’s not the answer either, is it?

 

The case here

 


When you hope for something you are often let down.

 

Which is the case here.

The girl’s port line is infected with candida.

The very same that was in the last one that was removed

just three months ago.

I have cried and gnashed my teeth.

I have been sad and angry, hurt and confused

but none of that matters

because despite my feeling that this is insurmountably unfair

the port will need to come out.

I don’t want to put another one in.

Ivy and indwelling catheters do not mix.

I know that now.

There are two different camps -

the few who agree with me

and the many who think I am insane

not to try again.

At the moment I just want the silly thing gone.

A picc line will replace it for as long as is humanly possible

and then Dave and I will have to make a new decision.

The paediatrician will be back on Monday

and that is when things will start to gear up for surgery.

Surgery again.

I can hardly fathom it.

The thought of putting Ivy through all of this is despicable.

I feel as though I have failed my littlest girl,

failed everyone, really.

Ivy has had a big cry.

She knows what needs to be done

and all we can do now is wait and recover.

 

 

Inner most.

I’m sitting in this small darkened room.

Ivy sleeps as one who is recovering.

From what,

I am still not sure.

I thought we were done with mystery illnesses.

Life has a funny way of grounding you.

The paediatrician has come and gone

and will remain gone now as he tends to his own conference

while we wait to see if this is another line infection.

I’m hoping not.

We talked for a very long time yesterday.

He wants me to take her to Westmead Children’s.

An extended stay.

I can’t.

I just can’t.

Not only logistically

but for vague emotional reasons too.

William,

born in the hospital in which we currently reside

was transferred to Westmead

and died there.

I lie awake some nights knowing in the very depths of my soul

that I will not survive another child dying

that I cannot possibly come out the other end

and be anything but a brittle, crumbling shell.

The thought of transferring down there

brings up sad memories

along with the harsh realities of Ivy’s illness.

They mingle together.

They intertwine

and the paediatrician,

although he could not possibly know my secret thoughts,

my heart’s weaknesses,

worried over the girl’s mortality yesterday -

defined it.

I worry too.

I think about it often

but push it down

trying to enjoy every moment,

hoping that each time we find ourselves in this place,

that we are fighting the good fight

and not watching on the side lines as death lines up to dance.

Wall flowers in our very own nightmare.

It is hard to wrap your head around morbidity and mortality

while you are waiting for your sick child to come back

from something that you don’t fully grasp.

Something that you cannot

because you can only ever be on the outside looking in.

The girl is better today.

Sitting up for small periods, drinking and eating some.

It’s not much

but it is progress

and I know that she will be fine,

given time

and lots of medication.

Meanwhile I can sit here,

and watch her sleep

and battle with my inner most fears.

 

Unfortunately not another blogging conference post.

This is most certainly not the blog post I had planned.

It was supposed to be about the conference.

It was going to be peppered with photos.

Instead I’m typing this in the hospital while Ivy sleeps

and sleeps

and sleeps.

I’m not exactly sure how this happened.

How I went from having the best weekend in a very long time

to driving in torrential rain,

with seven frightened kids (and a frightened me)

to the hospital.

How I went from feeling happy and hopeful

to tired and stunned and grumpy

but here we are.

By the time we are released

the blogging conference may very well be a distant memory

and my original post left,

with my heart,

in Sydney.