The needles make her cry.

I make her cry.

Especially on Mondays and Thursdays.

On those days she has three.

Mondays and Thursdays are quickly becoming my least favourite days.

I’d like to say it’s getting easier (they tell me it will),

that she can see that it only hurts for a minute

and that she is calm and understanding

but it’s not like that.

Not like that at all.

All of her coping skills are gone.

Sucked up by the toll of long term hospitalisation.

I’m not sure they will ever come back

or if she will need to relearn or formulate new ones.

Probably the latter.

We both need new skills, I think.

It’s more like this:

We wake  -

me, early

she as late as she can.

She asks me straight up which treatments she will need on that day

and I tell her -

“the immunoglobulin, the interferon and the growth hormone”

while she counts on her fingers, fine and straight as piano keys.

“That’s three” she’ll say

and I’ll nod and watch for her reaction

but usually she just braces her shoulders squarely and silently drinks her  hot tea

and I am left to wonder what she is thinking.

We ignore it then and she goes to school

and I do my thing

but we both silently fester and worry the day away

so that when the afternoon comes we are balls of nervous energy.

She knows the routine now

(daily, three times a week and twice weekly injections for almost a month – I guess you learn quickly):

come home,

change into something comfortable

have afternoon tea,

while I fuss and make up tinctures

and draw viscous clear fluid into syringes, noting expiry dates and batch numbers as I go.

She never watches.

The other kids play their part, grabbing things I need, bits I’ve forgotten,

clearing spaces.

I have a little team, which is both comforting and disconcerting at once.

When we are both ready she’ll find a comfortable space and I’ll try to find mine.

I think of all of the men and women I looked after, during a stint in palliative care

when I was a real honest-to-goodness nurse (not a nurse-mother)

and the little subcutaneous needles I placed in wrinkled, wasted bellies

so I could administer slow release morphine

and the relief that floated across their faces as the medicine began to weave its magic

and tell myself over and over that it’s just the same.

It’s not though, is it?

Not when it’s your own child.

I’ll try different tactics on different days.

I tell myself (and her) that this is the lesser of two evils

and that we will get better at it as time goes on

and that we have to do this because we have no other choices.

I tell her it’s nothing much, just a small sting

but I’m not fooling anyone – least of all her.

The physical part is just one side of this.

Mostly I just let it be okay to hurt.

Sometimes nothing you say or do makes any difference.

Some days nothing takes the hurts away.

The needle is thin and has two wings on either side.

It’s called a butterfly for its looks.

I think it should be called a wasp.

Why do we give awful things pretty names anyway?

When I clean her belly with the cold sterile swab, she starts to cry.

Her first instinct is to curl herself into the foetal position and not let anyone near her

and so we begin to force an unfurling.

Sometimes I can use just words but most of the time I need help.

One sister will hold one hand

a brother holds the other

and I position myself so that she can’t bring her knees up

lest she knocks the needle as it slides into place.

I’ve learnt that if I look her in the eye then I shake

and a shaky hand is no good for needling

so I soothe her with my words and concentrate on her belly

and the needle that needs to find its way – straight and true.

This is not a quiet time.

The girl sobs.

She sobs and she begs and she says things that break my heart.

“I’ll be good” she screams

and “please, don’t hurt me any more”

and my  least favourite –  ”I’m so scared, Mummy, so, so scared”

and there are days when the other kids are rattled and angry with me

and days where things feel better

and days when I sob too.

Sometimes I don’t know why I’m doing this and I need to take a deep breath;

ground myself.

It’s easy to forget that without these medications life would be harder for the girl.

Just all round harder.

Once the needle is in though and the infusion is started I kiss the sore spots.

Mostly the tears stop then

but some days they leak for hours afterwards,

small hiccups of grief escape her as she accepts that this is her life right now

and those are the really bad days.

For the both of us.

It takes a long time to write but truly, it’s all over in minutes

and I remind myself of that every day.

It’s done.

In and going by the time it would take me to buckle her into her car seat for the hour long drive to the hospital.

Over by the time it would take to wait for a doctor to come and find a vein

and hope that they get the stick first time.

It helps to think of it like that.

It helps thinking about the good things that have come from this.

She has a diary where she keeps her secret thoughts,

although they’re rarely secret for long.

She shows us often, which I think might be her way of communicating when words fail her.

Monday’s entry was this:

“I am going to have 3 needells (needles) today

a butterfly

the orinj (orange) one that stings the most

and the grothe (growth) hormon(e).

I am like a pin cooshun (cushion)”.

She is sadly wise, my girl.

Do pin cushions become hard and weathered, I wonder.

Or is their material initially resistant but with time relents to the tiny constant pushing and breaking of each

fibre until one day there is just no more give.

I hope she doesn’t feel like a pin cushion forever.