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Archive for November 2010

Arginine does not start with R !

yellow2web

Tonight from midnight, she’ll be nil by mouth again.

Tomorrow morning, we’ll travel back into the hospital.

We’ll put the numbing cream into the crooks of her arms, just over the best veins

and I’ll hold her tight as they cannulate her.

It was a decision I didn’t want to make but one I am okay with (if it’s ever okay to agree to let somebody do that to your child).

It was that or the port and while the endocrinologist was happy with that option, the nurses and the paed all warned me against it

for fear that the medication will block the brand new port,

gammy it up in some way

and for all things holy,

that is the last thing Ivy needs.

The test itself should take around two hours

and I am not sure what I am hoping for.

I guess, in a perfect world, it would be good to know that she is producing enough growth hormone

but this is not a perfect world.

It’s one filled with prednisone

and adrenal insufficiency

and a body that does not know what to do with all that it has been given.

It seems wrong though to wish for low levels of growth hormone,

it seems out of place to want the medication, which is a daily injection

but

to think that it may help,

to have that hope

makes the desire very enticing indeed.

Whatever the outcome,

whatever the results,

my wish for tomorrow is that she remains safe.

We had the no breakfast conversation this morning

and the  cannula one too.

Both were upsetting but she held it together,

with the promise of treats

and lunch afterwards

and praise for her bravery,

until tonight when her brother was trying to sound out Arginine.

“er, er, Re-arginine” he said, as he traced over the letters,

that I had written on the chalkboard, at her request.

“Arginine starts with R” he proclaimed proudly to all of us present, “It starts with R!”

“Arginine does not start with R, Noah” she tersely scolded, her lower lip crumpling into a quiver

“It’s starts with a needle”.

Indeed it does,

my sweet,

too wise daughter,

Indeed it does.

Grow.

beansweb

I always feel melancholy when it rains

and it has been raining an awful lot these days.

The morning is here again though

and I am thankful for that.

It may be our need for a new mattress,

now ten years old

and having been the stage

for the beginnings of labour,

many bouts of sickness,

A place to talk,

A fabulous hideout

and even a trampoline,

now worn and dimpled with the passage of time

that has sent my back into spasming fits of pain.

Or it could be that i’m carrying too much weight on my frame

and sitting for long periods has pinched a nerve or something.

Or maybe it’s just that time of year

when my body screams ‘NO!’

after twelve months of pushing it too far

at that point when everything really ramps up a notch,

quite a few notches, actually

and there is no slowing down on the horizon at all.

Whatever the reasons,

I’ve found myself out of bed in the small hours of the morning.

Again.

It’s quite peaceful,

4am.

The house,

which mostly groans in overcapacity

during the daylight hours

is still and relaxed,

even the dogs snore quietly

as I pad past their place of rest

and outside

the birds are just beginning their early morning wake up calls.

I’ve been thinking (always thinking)

with a week of busy coming up -

growth hormone tests

kindergarten orientation days

high school orientation days

and

Noah’s first occupational therapy session,

thrown into the mix

of our everyday,

I’ve been thinking about

finding myself amongst the rubble.

I’ve been thinking about next year

and how everyone will be at school

and how people are already starting to ask if I will be going back to work

or what I am going to do with all of my spare time.

It kind of makes me want to laugh out loud.

Big whooping, side splitting yelps of guffaw

because I really can’t see that much changing at all.

In fact, the school has cautiously warned me not to wander too far

as they find their way with Ivy and all of her medical needs.

When I say that

I really mean that they have said,

in no uncertain terms,

that they feel overwhelmed and under prepared for my little girl,

who likes to throw the world her very best curve balls.

The same doctors will need to see her

and even though I will try to secure appointments outside of school hours

I know that every other mother,

with a school aged child

will be trying to do the same

and being realistic about things,

there will be the usual Ivy sickness

probably more

if I’m being honest with myself.

No, I will be staying at home.

At least for now.

Is there anything wrong with that,

I wonder.

I am just one generation ahead of my mother

but in that time it has suddenly become

socially unacceptable.

It may also be wrong to say

I am kind of looking forward to it.

I think I might like to try gardening,

that therapeutic ceremony

of digging in the earth and planting a seed

nurturing and babying,

watching and waiting for something beautiful to grow

and in doing that

I think I may be

nurturing some part of myself as well

and that little piece of me

that has been buried for so long

may just find the sun again.

Yes,

gardening sounds like something I could do.

Never Forget.

neverweb

She wanders into the room and takes my wrist.
Ties the pipecleaner to it.
It’s itchy and parts of it poke into my skin

but I smile and thank her anyway.
A gift from the almost five year old girl,

thought out and sweet,

it’s value priceless.
‘This is for you’ she tells me.
‘So you never forget how much I love you’
and with that said, she potters back out of the room

and I’m left to wonder

how I got so lucky.