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Nine.

I don’t know what you would be like today.

Nine years old,

scuffed up knees and shoes, perhaps.

A crooked smile with many missing teeth

and a sparkle in your eyes that speaks of mischief and love all mingled into the deep blue of them.

I don’t know.

I’m just guessing.

Maybe your hair would be light still,

or perhaps it would be darkening to the same colour as your Dad’s

and you might be tall

or maybe not.

You would be determined.

When I imagine you into being I  understand that would be a part of your character.

All I know is that tiny newborn boy who fought every day for his life

and then that sweet baby boy

whose life light I watched snuff out

but that doesn’t stop me wondering who you would be today on your birthday.

I’m celebrating you.

I’m thinking of you -

even as the world keeps on turning on its axis year in and year out  -

even when everyone else forgets.

I’ll remember the gifts you gave me,

hang onto each memory of the day you came into my life

and try not to miss you too much -

just for today

because today is a good day.

Those days of darkness will come this week

but for today I will eat cake and celebrate

for the boy who would be nine.

Pluck – alternate title “and we were all very hoppy”.

This time last year the girl missed her Easter Hat Parade and I missed Noah.

Brilliantly, through the miracle of technology,

the parade was streamed into Ivy’s hospital room

and the Starlight Captains held a private parade for her and her inmates

but this year

the doctors pulled out all the stops and by the grace of half an hour we made it

and the pair were collectively happy.

This photo was taken a few days ago,

on the completion of the Easter hats -

a just in case photo -

you know,

just in case.

This photo was taken this afternoon.

After being Nil By Mouth, having a general anaesthetic, her immunoglobulin infusion,

and a pesky impacted tooth pulled

the girl recovered just enough to make the march (swollen face and all)

and then collapsed in exhausted happiness.

The boy (although becoming quite adept at avoiding my camera) was very glad to see us there.

He was quietly happy too

and so we celebrated the great second grade Easter Hat Parade together.

I think the gentle anaesthetist said it best -

“if only we all had as much pluck as Ivy, then the world would be an amazing place”.

Indeed,

ours was definitely amazing today.

Hoping you all have a happy Easter -

however you celebrate this time.

De- sensitising.

 

If I were to pin point the exact moment in time that Ivy’s anxiety levels spilled over and out of her cup of reserve

it would be when the PICC line got stuck in her infected and inflamed vein

and they tried to pull it out.

Everything was hard after that

and in fact,

with all of the illness surrounding those procedures last year,

followed quickly by the addition of three subcutaneous needles almost daily

it makes sense that that period in Ivy’s life would set off extreme fear issues for every future medical event.

When questioned lately about that time of her life she said,

in a totally non dramatic, practical Ivy kind of way;

“I thought I was going to die.”

It’s hard to hear her say it

because it seems unnatural for a seven year old to feel her mortality

and because I thought it too at some point during that time -

although I never spoke it to her.

Thursday will be the last of her infusions under a general anaesthetic.

Four pain free, stress free weeks

where the doctors have seemingly and seamlessly worked as one amazing team -

and okay,

they may do that at other times but never so obviously as they have these last few months.

The lovely pain doctor at the helm of this new communicating giant

has made sure I know most of everything discussed

and I couldn’t be more appreciative.

There have been so many good and positive things that have happened since she became a part of Ivy’s support network.

The other doctors seem to care more,

know more,

do more.

Last week, the new doctor (who really isn’t new anymore)

and the kind surgeon

came to review Ivy while she was having her stitches removed.

Expecting the worst, I imagine,

as the last time she had to have that procedure done

she became so distressed that she almost took the eye of the Fellow trying to take them out.

She needed sedation then

and for every procedure following it too

but

Ivy had made the decision herself  to try without Midazolam this time (a very big step for her)

and was in the midst of having the first stitch removed when they arrived.

We were both a little distressed by then.

Instead of waiting outside (which is what commonly happens)

the new doctor held the small girl’s hand

and stroked her hair

and breathed with her (and I)

while the kind surgeon was Ivy’s cheer team -

“good girl, Ivy. You can do it.

Good girl. You are amazing”.

I could have cried.

This is the way I imagined all good doctors to be.

This basic human instinct of caring for another person

and because of that,

and possibly six weeks of anti anxiety medication and therapy,

the girl was able to conquer her fear -

all stitches removed without sedation.

The doctors,

well -

they celebrated openly and as happily as I did.

They made a big deal of it

and Ivy felt that

and in turn felt proud of herself.

It was a break through.

We have been talking a lot, this week -

the girl and I,

holding the small butterfly needle (which she has named ‘noodle’)

and ‘seeing it for what it is’,

which is our new way of breaking down scary things.

If you hold it just right,

Ivy tells me,

it looks like an abstract sausage dog of sorts

and the nose

is just a metal thing that stings only for a minute.

She knows that the ‘numbing medicine’ (lignocaine)

and ‘the spreader’ (hyalase)

stops the infusion from hurting her as it pushes its way under the subcutaneous layer

and we have been practicing her (our) breathing skills again -

something that she has not been open to since early last year.

I can only hope that all of this is enough

and that the next phase of this desensitising program goes as smoothly as it can.

My expectations are mixed in all honesty and I’m pretty sure hers are too

but it’s time to try.

It’s time to step into the great unknown

and give Ivy the chance to be in control, once more.

 

How to decide whether a boy is good enough for your sister.


Noah: so, tell me about him.

Immy: well, his name is ["Fred"]

Noah: aaaaaand?

Immy: and he’s my friend

Noah: aaaand?

Immy: and nothing. That’s it. Why, what else did you need to know?

Noah: well, is he a super hero, or something?

Can he shoot fire from his fists?

Can he fly?

Immy: No, Noah but he can sing.

Noah: Um, sorry, if he hasn’t got super powers then he’s  just not good enough for you.

 

Noah –  the ultimate judge in boyfriends.