Archive for November 2010
Arginine does not start with R !

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.

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.

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.













