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Each memory.

My house is littered with a rainbow of knitted blankets this morning.

A grandmother’s last act of love for her grandchildren

and on each is a note -

it reads “with love from Grandma” on every one.

She is everywhere this morning

and if you hold the blankets close

and breathe them in

you can just catch the scent of  sunshine

and the soap she used

and warmth

all bundled up together,

intertwined with the wool.

We lay awake together, most of us -

crammed onto the queen sized bed, this first morning after her committal,

watching as the sun crept over the mountains.

The purplish hues changing to pinks

and then the faintest of oranges.

Things feel very strange today -

sad but not.

We are all a little lost.

It has been a very big week with the ordinary mixed in with the extraordinary,

the everyday overlapping with  the stuff of dreams and nightmares

and here we find ourselves,

churned up and spat out at the end of another passing of one of our most important people.

One of our loves.

Life feels a little barren, in truth.

I keep thinking of cliched things -

that she wouldn’t want us to feel sad,

that she is no longer in any pain,

that her faith was strong and she was content as she lost her grasp with this earth

but they seem like placations

or band aids

or something that disallows my family’s right to feel the great chasm of  loss.

To protect everyone from this pain seems wrong

and so we will tread slowly together,  for now;

take each day as it comes as our reality takes over our healing space once more

and we relearn a life without her

and cherish each memory.

 

Dear Rosie,

Dear Rosie,

 

We feel our distance today -

we feel so very far away

but that isn’t worrying you any more.

That’s good.

You shouldn’t be in pain -

not you

not ever

but cancer has no sensibilities, does it.

No rhyme or reason.

No fairness.

I will miss you a lot.

I miss you already.

I’ve missed you since you were diagnosed, nine months ago.

It feels as though we lost a big part of you then.

It’s been an honour to know you -

your passion for undoing all of society’s wrongs

your kindness

and your gentle spirit.

You were all things good in this world.

Life will never be the same without you here.

Nobody tells you the rules when you are dealing with illness.

Nobody says when it’s okay to ring, what to say, how to cope.

You just bumble along and hope that it’s the right thing to do

and then it gets to be too late

and things are left unsaid.

When I was scared and just 19,

you took me in.

You trusted your son and you accepted me as one of your own.

I’ve always loved you for that and I’m not sure I’ve ever thanked you.

Not enough, anyway.

I know it was really hard work

and difficult

and different

but you didn’t give up.

Not once.

I need to thank you, for bringing up your beautiful boy just right.

He is amazing and you should be  so proud.

I know it hasn’t been roses, all of the time.

We’ve had some issues, along the road  but I was silly and naive

and you were as patient as could be.

You helped me to grow

as a mother

as a wife

as a person.

You’ve helped to bring our children up to be these amazing creatures

and I see parts of you in them every day.

I’m grateful for that.

I’m thankful for you.

All of those days when I was at University, all the times I was at work, you were there for them.

When I’ve had to be with Ivy in the hospital you’ve looked after them without question.

You’ve been their world.

The kids love you like there is no tomorrow,

which there will be no more of now.

There are no more days to spend sitting with you around the table,

drinking tea

eating ‘Mac and Cheese’

or Chilli Philly dip.

There have been a lot of tears.

Maddy was in panic mode -

she wanted to be with you as you took your last great leap of faith

and Immy is looking for answers

she is being philosophical.

It’s hard to see  all of  them have the realisation that they won’t see you anymore,

hear your voice,

your laugh,

your deceptively wicked sense of humour -

that there will be no more scone making days with Grandma.

I know how much you would want to protect them from this.

They would give you the world if they could.

We all would.

Dave is so much like you.

He has bunkered down and he’s not saying much at all.

Keeping his emotions close.

I can see him struggling but he was thinking of you all the time.

 

I promise  that I will look after them well.

The thing I hoped you knew

is that you were loved.

We all love you very much.

I love you.

I hope your passage was swift

and safe.

I hope you have no more pain wherever it is you have gone to.

We will  hold you close to our hearts forever.

Namaste, Rosie.

 

Parking.

Parking at the hospital is interesting at best.

It’s difficult on a good day -

when you are in a small to middle sized car

but when you are in a bus

it’s never a good day to find a parking spot at the hospital.

There are good nights, say at around 1am.

Then you can get a spot close to the hospital doors

but if you need to present,

in an emergency

in the middle of the day,

say, on a Wednesday, for example (but every day would be similar)

with a vomiting, feverish child

then finding a parking spot for a big white bus

is impossible.

Impossible and fine worthy, apparently.

Let’s just imagine the car park system at the hospital for a minute.

It consists of two multi-level areas.

One is at the front end, where you generally need to be for an emergency

and the other is at the opposite end of the hospital,

which makes getting to where you need to be about a ten minute walk on any given day.

The *Siberian car park has a top level – reserved for patients with disability permit (of which we don’t have because Ivy may have trouble walking at times and come to the hospital frequently in a state that makes her unable to walk but at the end of the day, she does not need a wheel chair or a device of any kind because she has me and my legs)

but by 8am that car park is full

and every other level underneath cannot fit a bus.

Walking is not an issue generally, if you are lucky enough to secure a space

but add in a vomiting child to the mix

and it’s not ideal.

Which brings me to the other car park.

Let me preface this situation with a story about a mother in a big white bus

who, after circling the car park one morning for over an hour,

finally found a small non- disability spot, that, with a little three pointing, she would be able to wedge her long vehicle into

but before she could angle the bus

a small angry woman, in a smaller, sleeker car bypassed around it and took the space.

I kid you not.

It happens frequently in the hospital car park.

People are busy.

They have appointments

and of course,

when you are feeling poorly, you don’t need to consider anyone else

because you are sick and therefore the most important person in your world.

Yes.

Everyone who has a need to be at the hospital will attempt to park in this parking station -

even in the middle of the day, on a Wednesday

when you can clearly see from the road that there is not a space to be had.

Cars circle the two levels,

stalking people like it is three days before Christmas and nobody has started shopping.

If you are driving a bus, the second level isn’t an option

so you have a choice of sitting on level one, waiting if you have the time

or circling out through the exit, around the outside of the hospital

and back to the entrance to try again.

There is a courtesy  service -

where you park at the football stadium and hope the bus is coming soon

but again,

in an emergency it’s not ideal

which brings me to why I was parked on the road, along side the hospital

and where I was given a nasty yellow notice  slip -

there is nowhere to park a big white bus, with a small vomiting child inside

in the middle of the day

on a Wednesday (or any day)

and I parked there in desperation.

I will pay my fine but I will pay it under duress

because I think that they should have adequate parking for buses

and they don’t.

They don’t have adequate parking, for a very public, highly populated area, period.

Parking is impossible in the delegated parking stations

and illegal everywhere else

and that’s really hard to deal with when you need to frequent the hospital

often in an emergency.

 

* Siberian =  as far away as you can imagine.

 

Weaving their magic.

Last week, the day before Ivy needed to go to surgery

and when she was stable enough,

the Starlight Captains in our hospital organised  time for Ivy to come down to the Starlight Room.

They made sure that everything was okay with our nurses

and that there was little risk of infection

and then they pampered the small girl

and made her feel like the most important person in the world.

Painting fingernails and toenails

and faces

seems like  such a simple thing

but it means so much when you are small and isolated

and brings so much joy.

Ivy is always relaxed and happy when she is with them -

even on bad days they can always bring a smile to the girl.

 

The Captains are like a breakthrough of sunshine on cloudy days

with their amazing energy

and kindness towards all of the children who frequent our hospital here.

I will always be thankful for them and for Starlight.

This year the Starlight Children’s Foundation Australia is celebrating 25 years of transforming the experience of hospitalisation and treatment for seriously ill children across Australia.

It was founded in 1988 and has become such an integral part of care for children who are struggling with illness.

Starlight have been such a big part of our lives since the very beginning of our journey.

The Captains especially have always been there.

They symbolise happiness and laughter for Ivy and  for our other kids too.

Starlight represent time out from the seriousness of life with a sick child

and they represent hope.

Hope for Ivy

and for me.

That’s kind of a big deal when a lot of  the time things feel out of control

and a little helpless.

Ivy and our family have been invited to be ambassadors for Starlight as they commemorate this year

and we are truly honoured and humbled

and a bit proud as well

but most of all we hope to be able to give back just a little of all that we have been given.

If you are a supporter of Starlight (and thank you if you are), you might see Ivy’s face around the traps

as we share Ivy’s story, her wish and how important a foundation like this is for families like ours.

I’m looking forward to writing about some of our adventures here too

and hope that in some small way we can help to celebrate the wonderful Captains,

the volunteers

and the people who work tirelessly

weaving their magic into the world of seriously ill children everywhere.