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Archive for April 2011

Westmead bound.

We’re here.

In this place.

It’s okay.

No, really

it is.

I will admit that we were both shaking

Ivy and I.

Our hands clasped tightly, our fingers laced

both of us frightened of the past and the future,

the sounds and the smells thick with promise

and with pain.

+++

The ward is vastly different from where William was

in fact different from anything I’ve ever known.

Me – a hospital parent veteran.

Out of my league.

It makes me appreciate our little ward at home all the more

and the nurses

and yes, even the doctors.

It’s not that this place is terrible because it isn’t.

It is a busy, bustling hive of activity.

On one side

there are huge rooms

dedicated to kids just like Ivy.

The immune deficient, the children with endocrine issues,

the small people who will deal with hematological challenges

for all of their lives.

They come and go,

many with sisters and brothers (it’s the school holidays, after all)

and all of them with a rushed, tired parent.

They look weary and worn by the system.

I can see myself in their eyes, when we walk our own hospital corridors.

On this day though

I must appear like a scared rabbit

because they look at me kindly

and when our eyes meet, I can almost see the stark memories

of their first time reflecting in their faces.

They say hello and show us where to find things.

There are many doctors doing the rounds and every child,

every family

is greeted warmly and with familiarity.

It is very much like we are on the outside looking in.

Our doctor comes.

She talks fast and does a scratch test

which Ivy reacts to.

She doses Ivy with the first dose of lactoferrin –

at 1/100th of her original dose

and twenty minutes later Ivy is a ball of itchy redness,

her cheeks hot with allergy.

The doctor is both interested and excited.

If that is the worst that Ivy’s body will throw at her

then she can definitely work with it.

Our appointment, which began at ten is over.

It’s only eleven

and our room is not available.

We have lunch

and escape to the glorious sunshine

but at three,

David has to go and our room is still not available.

We are given a crash course on the workings of the ward.

We are on the parent care side.

There is minimal nursing care during the day and none at night.

We are basically boarders within the hospital unit.

Only there so the doctor can monitor Ivy as she goes through

desensitization

and while tests are taken.

The remainder of the day we are left to our own devices.

Finally we are given a room.

Ivy promptly starts to cry.

It smells funny.

It’s not her hospital.

Where are her nurses?

She is redirected with colouring in and drawing.

A DVD is next.

The shower is strange and she cries through that too.

She cries because I have brought the wrong pull ups

because I am brushing her hair wrong

because she doesn’t like the painting of the three girls on the wall.

They are all little things

but they are everything as well.

I spray the room with some of my perfume

and soothe her the best I can.

Soon she is blessedly and thankfully asleep.

At least we are both on the same page, I think.

It is very different here.

The bed is a standard issue fold out.

Cardboard thin, bar across the middle of your back edition.

Some things are the same everywhere.

I can’t complain.

I’m thankful for the space

that has a verandah, with an opening door,

so fresh air can make it’s way into the room.

I’m grateful that it is nothing like the place where William died

and that I am essentially okay with being here,

that the memories are not all consuming

and that I can concentrate on the reason I am here:

to find a way to help my girl feel better.

Another TKO

On Wednesday,

before we were discharged to the Out of Home program

we were cornered

(or should I say; I felt cornered).

We needed to agree to go to Westmead Children’s Hospital.

I had fought every single day for the last three days

for gate leave,

to avoid more surgery for Ivy –  less than a week after the last,

to make the doctors see that,

although Ivy is our unwell child and I want the very best for her,

the whole of our family is affected

and that it is not easy to organise things

to suit the doctors.

Fighting for any sense of normalcy.

On Wednesday I had nothing left in me

and when I was given the ultimatum

I gave in.

The paediatrician (who is away, with his own family) will be well pleased.

 

A week long admission to my least favourite place,

less than a week after our discharge from our ‘regular’ hospital (I can’t believe I just wrote that – regular hospital)

seems like a death sentence at the moment.

It is school holidays and Ivy and I have seen very little of our family

nor will we see much of them as we are holed up in a single ‘apartment’ over 150 kilometres from home,

in isolation, once again

waiting for doctors we do not know (and who do not know Ivy)

to run a string of tests

and desensitization programs.

New policies and procedures to get used to,

new nurses

and traumatic memories,

so close to anniversaries and places of death.

I’m not sleeping well.

My feelings are tumultuous at best.

My selfish being

wants to run.

It wants to fight and tell the doctors they cannot take my choices away.

That Ivy is my daughter and I will not submit her

or my family

to this situation anymore.

That they cannot do this to me.

I need time to regroup.

Time to build up strength,

to be able to fight again

but

I also know that this needs to be done.

I want this for Ivy.

I want it for us too.

I want to get it over with,

for the doctors to just leave us all alone,

to have time to heal

and I know this is a means to an end,

that if I do this for Ivy

her outcome may be better.

As it stands now,

we are running out of venous access,

running out of antibiotic options,

running out of time.

I know something has to change.

It’s just…

I wanted to be ready for it, I guess.

Monday is hurtling towards us,

with just a weekend to pack, snuggle, love, live and laugh

to breathe each other in

and to say our goodbyes.

Again.

It’s not enough.

I’ve wanted the doctors to come together and make decisions as a team for a very long time

but now that they are

it feels like I’m in the ring

boxing it out.

Me

against the world

and I’ve just been hit with another TKO.

 

 

 

because the only thing better than getting out of the hospital…

…is getting out of the hospital in time for the Easter Hat Parade.

The littlest bodies in the house are very excited

and I think there is such a thing as the Easter Bunny.

 

Fly free.

Five days does not seem long enough to etch the memories of a soul onto your heart

but five days is all that I was given.

To remember little feet and baby fuzz.

To remember that beautiful earthy smell.

To commit every single detail of a not so small boy

with an extraordinary heart to my own.

It’s not enough.

It will never be.

+++

Seven years is a long time for pain to subside.

It’s long but it isn’t

when it only feels like yesterday.

It could be seventy years and it would still hurt, I think.

A different kind of ache

but an ache just the same.

Some days I wonder what he would be like.

Some days I can’t even say his name

but mostly there is a space,

a broken piece of my heart,

that is crammed full with history

and longing

and love

and today I can feel that -

like a gaping wound

that cannot be repaired

as all of my memories fly free.

Like him.

Fly free, my sweet little one.

Fly free.