Can I tell you what grief feels like

Can I tell you what grief feels like...

It is a knot, a feeling that you can feel.  I am convinced that if they took an MRI they could see it in me.  Sometimes it hits in the chest, right between the breastbone.  A messy dark knot.  Other times it is down low, a thought sparks it off, usually late at night and there it is below the stomach but centred, like it is on some invisible string along the central line.

It is palpable this feeling.  The most urgent, the most deep grief.  That feeling that hits when you realise that other times you have been existing, putting one foot in front of the other, but then it hits.

At other times, it's a sense of shock.  The overwhelming thing I keep muttering to myself is how did I end up with this life.  Why did I end up with this much sadness.

Has this really happened.  I keep your Miss T's cradle with its pink flat bear and dummy in the corner of our room.  Partly it is there as I can't figure out what else you could do with it.  It's also there as I am scared otherwise I would believe this is all just  a bad dream.

It's getting colder now, the days of being able to know what outfit she would have worn are almost over.

Now I can only look at catalogues and facebook posts, think I would have got that for you.  I've thought about asking my favourite shop if I could just go around their racks and collect what I would have purchased, they could put it back on the rack later.  I am so tempted to buy things for Lucia, Peggy, Charlotte and Heidi: your parents may think I am crazy, but you would have good wardrobes.

Once we got a week past your birthday, I have amazingly stopped thinking about this time last year.  I think it must be my brains way of coping by shutting off those thoughts,  as I long for those sunny autumnal days on the lawn in Parkville.

You were inside, safe but battling, unwell but in the right hands.  I think of all of those other parents and statistically know that they probably all of them still have their children with them, as most survive.  Even that woman who spent most days on her mobile trying to convince people she shouldn't have to pay bills as she had a child "at the children's".   Even the woman with 6 kids.  There's some I hope are OK, the kid who had was on a permanent care order with the same sex couple since they he was 5 days old (the stories you overhear along the corridor), the 14 year old aboriginal from a remote community who hadn't been home for 4 months.

I feel awful about this weekend, this weekend is "run for the kids".  Probably sounds like a great idea to  fundraisers but it tears me apart, a constant reminder that at your funeral I was convinced I would be thin and fit and would run it.  Here I am 5 months later, still fat and have only completed one month of couch to 5k.  Haven't even managed to do that for you.  Only able to squeeze in a couple of visits to the gym each week as I am too scared my boys might need me.  Still trying to catch up, a list of things to do.

It's 14 days since you would have turned one, I split my time between trying to look at one year olds for comparison and trying to avoid them.  I play with the girl who would have been your best friend and for a moment trick myself that she thinks she is with you.

I walk around a half built office and for most of the time I think of you.  I had planned my new office for you, where you would sit, where you would play, even a nappy change place.  Half the design is based on what I loved about the RCH, the kitchen design is a basic copy of the ward kitchens, our office doors are based on the doors in ICU.  Of course, you were in a planning meeting for it 12 hours before you died.

I treat myself to a pedicure, it reminds me of the times I held you while in the beauty salon.  I read a trash magazine: I realise that I know your age relative to every paparazzi baby.  You so would have had Harper's winter wardrobe.

That's what it feels like

Things to do

Tis is a variation of those "what we are loving around here" posts. In the spirit of if you put it out to the universe it might just happen, this is some of the many things on my to do list at the moment:

*i need to book our mid year holiday
*i need to organise our Christmas at an away destination
*i have about a million things to organise for the move to our new offices
*i should buy new runners
*i have to become creative and finish the response to a wedding RSVP that is well overdue
*i need to get moving on our house renovation plans
*i need to organise the year to date in project life
*miss t doesn't yet have a gravestone
*i have a few special thank you'sto write
*i have about 20 random emails to respond to
*i need to find an hour per day to exercise
*i need to co-ordinate homework time better
*remus needs a new Carlton guernsey before next Thursday
*i want to make another batch of tomato sauce
*i need to clean the study and find a spot for school treasures
*i have to sort out what happened with the uniform order I put in that has gone AWOL
*i need to book accom for weekends coming up in Melbourne
*i must finish reading the Tyler Hamilton book and then read the Rosie Project
*i need to buy an outfit for the aforementioned wedding
*i need to clean my car
*i want to organise about 4 social events I have thought of
*i have about a hundred blog posts I want to write
*i am on a tight deadline to organise the content for our new work website
*i must make hair and beauty appointments
*i have about 3 dinner bookings to make
*i have a bag of clothes to take to the dry cleaners that has been in the boot for weeks, I am adding to it daily
*the car itself needs a clean


Ah, the list could go on

But that feels better.....but I still need chocolate

This time last year: Royal Children's Hospital

Yesterday marked one year since the first time we walked through the doors of the Royal Children's Hospital, the place that we would spend so much time at during Thomasina's short 7 month life.

Before her birth, the hope was that her little misconfigured heart would be able to compensate for its strange construction to the extent that she would not need to undergo her first surgery until about 3 months.  In those final weeks of pregnancy the scans held hope that this would be the case and we prayed this would be the case.  In the hours after her birth, her oxygen saturation levels began to drop and over the next 24 hours it was confirmed she would need that first surgery to insert a shunt immediately.

On Sunday 11th March Thomasina made her first trip in the big wide world - in a Newborn Ambulance from Monash to Parkville - I liked to see it as her moving from my university world to Pete's.

The hours leading up to that move were tough.  You know all those stories of poor mother's with healthy babies having woeful days as their milk comes in: well imagine having that day sitting in an open special care baby unit with 8 babies and their one-on-one nursing care as a Chinese student couple say their long goodbyes to a baby born at what must have been no more than 20 weeks.  Imagine having that as they ready your baby for a trip across town for life saving surgery.  Imagine that as you sit through the obligatory tension of handover between 2 separate health providers, each seeming to want to prove they know best.

Sometimes I think that despite all that has happened, that morning was the saddest I've been.

 


The baby transport team were well organised though, asking many times if we had been to the Royal Children's before, explaining how to get to Koala ward where we would meet up again with this little person who had only been in our lives for just over 72 hours.  As I clutched the information brochure they gave me I reassured them that yes I had been to RCH before - deliberately not mentioning that it was in hard hat and hi-vis vest when it was a construction site.

I will never forget the feeling as we walked into RCH for the very first time, the first time the doors from the carpark opened onto the main street on a quite Sunday afternoon.  Immediately a sense of calm came over us, a feeling experienced everytime we entered that building.

A feeling I long for now.

Many who have been through the experience of a sick one at RCH, or know someone who has, speak of the medical and nursing care - you know world leaders, so talented, so caring and so on.  While this is true and was true for Thommy, it is the building that I treasure so much.

I am a bit of design freak - I love the pleasure given by good design like my Georg Jensen pieces, my Fink jug.  Despite having spent years in meetings  thinking about hospital design this time last year was the first time I had experienced how much difference a good building can make to a person at the lowest point of their life.

The natural light flooding so many spaces.

The gardens and parkland surrounding the hospital, being able to laze on the grass in autumnal sunshine.

The peace and calm that came from a policy that banned notices or signs being pinned on walls - removing that visual noise made for such calm

The beautiful family lounges on each floor that were so culturally important to the families of middle eastern origin who would gather their bringing the most amazing smelling food in beautiful containers.

The wonderful lighting on the wards that changed over the course of the day and felt more like a department store than a hospital.

Those wonderful green couches, so comfortable for the long days and nights

The cleverness of windows to parkland in the theatre suite, so although you are leaving your child for 5 hours on the operating table you can see there is still a day happening outside.

The wonderful playground outside where brothers can let off steam during the long weekends spent hanging around the hospital, the playground where I felt no need to be a helicopter parent and they got to climb more than they ever have before - afterall ED was directly below it.

The cafes with good coffee and the staff who got to know your order within a week.

And of course the wonderful Captains and the Starlight Room

It is true that we will be forever grateful to the staff of RCH for all they did to give us our beautiful Thomasina who was so well for so long.  From the wonderful Yves and his quietly stated ways, the many, many anaesthetists Thommy saw, all with their beautiful watches.  The nurses in their jellybean coloured scrubs, the cleaners who you got to know over time, the sweet orderlies who would come to accompany you to surgery.

I'm switched on enough to recognise that some of my love for that place now is about what it symbolises - a place where we spent so much time with Thomasina, a place where we felt so safe, where we had such hope.

I know that as the tears flow each time I drive down Flemington Road it is not all about missing the building, just like how sometimes know I will put Microshield on my hands as that smell reminds me of those times

This time last year I didn't realise how much a place could come to mean.

In writing this post, I went to look up some statistics from RCH.  I was stopped in my tracks when I came across this video - you will recognise some people in it.  I couldn't look any further for the statistics....

Royal Children's Hospital video

10 things an aunt didn't know this time last year

Following on from my recollection of the things learnt in the past 12 months Thomasina's wonderful aunt who has been such an amazing support to us constructed her own list, so special to read about Thommy's impact on Flis, a journey where her professional life had to merge all to much with her personal. Thank you Felicity Bridget Thomasina for all you did and these wonderful memories




1. It doesn't matter what your role is, in the eyes of a 3 & 7 year old you are nothing compared to Captain Starlight.

2. That it's impossible to work out a good answer to the question "how is your sister & her family doing?" Any response seems glib.

3. How impossible it is to put into words my admiration for parents who managed to let their daughter experience so much of life and made sure her brothers were part of every step of the journey. Understandably it isn't something all parents of a seriously ill child manage to achieve but, somehow, Ree & Pete did.

4. How amazing so many people are. How crap some people are.

5. How much I loathe descriptions along the lines of "they battled illness" and "their extraordinary will to live". Don't imply that some seriously ill people could have lived if they had more willpower or a different attitude. It's simply not true.

6. That shopping for clothes for little girls is one of the best things in the world.

7. That creating imaginary back stories for the many people you meet in hospital keeps you amused for hours.

8. That a phone ringing and three words "Thomasina has died" can still play on an endless loop in your mind.

9. That the most sensitive people, even during the hardest of moments, would be two 3 & 7 year old boys. Time and time again knowing the right thing to say and the perfect gesture to make.

10. That in 7 months a person can positively change your life, the certainty you have that they will always be a part of you and that you can miss them so much it literally hurts.

Hear me roar?

For over 25 years I have called myself a feminist.....and been proud to do so.

My early days of feminism were part of a teenager finding her way in the world, my mind filling with Sylvia Plath, Germaine Greer and others.  I had many an argument in the search for equality, in a school where the ultimate prize was being drafted to an afl club.

I went to law school whe the number of male and female students was almost equal but still the male students dominated lectures and tutes  I lived in college and loved it, but college life was dominated by boys activities, the female students often objectified and vilified.  The achievements of female students at college often flew under the radar.

I have worked for nearly 20 years in the still male dominated industry of law.  The females of those equal number of law students have not continued in the practise of law.  Looking round, I see few of my female university colleagues.  Most have departed the law, often for roles more comparable with raising a family.  I still see less women judges and silks.  I am one of only 9% of partners I law firms in Victoria who are female.

I have had 3 babies without any decent paid maternity leave, I have juggled young babies, a business, Childcare, being a lawyer.

My daughter got to live her whole life only knowing her country having a female Prime Minister but I see a nation that is challenged by having a female Prime Minister, many seeing no shame in the most awful treatment of her.

I live in a town that still has a male only members club.  I, despite my own efforts, live in a town that still does not have true options available to women.

Everyday I deal with clients who are the victims of physical, verbal, economic violence.  I work with women who are severely economically disadvantaged, career experience and options, savings and superannuation effected by family duties and relationships.

I am still a feminist and I still have a lot of work to do......


Happy International Women's Day

10 things I didn't know this time last year

1. Children really believe Captain starlight is real and leaves the starlight room in a rocket each night

2. How to change the ranges on a oxygen saturation monitor so it stops beeping

3. That the best spot for 3G coverage at the Royal Children's is at the front door of the Murdoch Institute

4. What drugs you can run in the same line as heparin (my lowest point was the night I corrected some poor young registrar on that)

5. Why we need a spleen

6. A colony of meerkats always has one sentinel keeping guard

7. That is your veins keep collapsing the next place to put a line in is in the skull

8. Exactly how much fun it is to shop for little girls clothes and how sad it is to only be able to do that for the shortest time

9. Sometimes it is the littlest things that people do or say that can mean the most

10. That you will never forget the taste left in your mouth after giving CPR

Project Life: Thomasina

Imagine the magic of there being a photo of you, or something around you, for every single day of your life.

An amazing story of your life, even if your life only lasted for 7 special months.

I treasure that we have that for Thomasina, even though I ache all over from the effort that has gone into collating them.

In 2010 I discovered Project Life. I am far from being a scrapbooker or a clever photographer but was drawn to the concept of trying to document the everyday in life by attempting to take at least a photo a day and to then collate them together with little notes.

In 2011, I launched into Project Life, loving trying to take a photo a day. Loving the beautiful cards and colours, the ease of slipping the photos into the pockets. Committing to take a photo a day means you quickly see the photo opportunities you would not otherwise see. Photos of the everyday. Photos of the quirky, photos of the mundane.

Without Project Life, I don't think we would have thought to take so many photos of the 6 weeks that Thomasina spent in hospital. While it is magical to have photos of a pretty baby lying in her hospital cot, the habit of taking daily photos meant we took photos of the whole hospital stay.

Photos at day 4 strapped in for the transfer from one hospital to another

Photos of the brothers waiting in the hospital room itching to get out and explore the playground

Photos of mum and dad anxiously waiting during the 5 hours of surgery

A photo capturing exactly what a 6 day year old looks like after open heart surgery

So while Project Life might have been designed thinking of the usually joyous path of a baby's first year with milestones of first smiles, teeth and crawling, it meant that while we only had Miss T with us for 7 months we have thousands of photos of that time, photos showing every part of her short life.

It has been a wild mix of love, happiness but utter heartbreak to put these photos together as Thomasina's baby book. Over 180 pages it flows, telling her story. Later I shall share more of this "baby book" but for now, I hope you treasure and photograph the everyday.