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
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.
We feel our distance today -
we feel so very far away
but that isn’t worrying you any more.
You shouldn’t be in pain -
but cancer has no sensibilities, does it.
No rhyme or reason.
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
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
but you didn’t give up.
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,
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 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
I hope you have no more pain wherever it is you have gone to.
We will hold you close to our hearts forever.
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
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.
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
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.
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
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,
and the people who work tirelessly
weaving their magic into the world of seriously ill children everywhere.