Time continues moving

So I haven't been here for a while.

First life was a bit busy and the constant stream of ideas to write continued to swirl in my head but never made it to the keyboard.  Then there was an amazing holiday (and being upstaged by a nearly 8 year old blogger).  Now the last 4 weeks have gone past quickly.

I've also been struggling on what is the next thing to write.  I have so many stories of travel and fine food and life that I want to share.  But I need to be honest and honesty means sharing what fills my head for so much of any day, honesty means Miss T.

The past couple of weeks there has been a convergence of things that have tipped my equilibrium out of balance, leading me to again reassess priorities and realise that there are things I can't avoid if I want to keep things on something anything like an even keel: things like exercise and writing.

So, I'm back.

I work so hard to make sure that me and Pete and the boys are protected against the things that can crack through the suit of armour we've developed.  But sometimes there's just too many things at once.

Spending Saturday doing our bit to try and ensure that Australia might have not had to endure an Abbott government meant a day of tension.  As I stood handing out the how to vote cards, lapping up the thrill of election day (even when facing a certain defeat) I was on high alert.  Dreading the moment I see someone I haven't seen for a while who asks about Thommy, or seeing someone who doesn't know she died or even a stranger commenting about children.  The constant parade of young families turning out to vote received not only a how to vote card,  but also in my mind an comparison of the baby to Thommy at that age or a comparison to what Thommy would have been like at that age.

Deciding that the equilibrium needs balancing also means reading more than just twiitter and blogs - but trying desperately to finding books that have no mention of babies, death or anything else that could make me less relaxed - or more bitter and twisted.

Facebook has ben a saving grace for me, allowing me to maintain contact with people when sometimes face to face is just too hard, but even it has been hard this week.  A story of a sick child making its way into my feed brings on so many thoughts, throws out my day.  Then this really odd thing where facebook keeps suggesting I like a page about potty training.  Is this some facebook logirithim that remembers I posted baby photos and would have an 18 month now?  Well, your logirithms aren't smart enough Mr Z.

Attending a funeral, where people are worried how you will cope at a funeral, when instead I just sit there and think nothing else could ever make me sad again.

Then there is work.  How every day I just have to keep bouncing up from the punches as my world is so full of reminders of Miss T.

Opening a file and finding a letter that was dictated on the 12th October last year.  A bloody letter I did with Thommy sitting beside me 9 hours before she died.

Starting your day opening an email where there is a comment about a work colleague knowing her child was ill and "mother's intuition", your day then ruined with thoughts did you not have enough of that intuition.

How do you write a letter to seeking a report in a matter from the paedtrician who was your and Thommy's great ally, when you know a letter from you will probably upset not only him but also his staff's day (because of course you used to write him updates on Thommy prior to any appointment on letterhead!)

How you just have to keep ploughing through the day, when it feels like you have an Acquired Brain Injury with so much of your brain having to be switched off - the part with the guilt, the part with the pain, the part with the memories.

How you just wish people would think about what they say, ask how you are travelling.

That photo is from this day last year.  A very exciting day with Miss T.  That's her all frocked up in her new Ralph Lauren dress looking very Hamptons-esque in the waiting room of her cardiologists office.  It was the first visit after her second surgery.  A visit she passed with flying colours.  We didn't have to see him for 3 months.  We organised the next visit for a Saturday in early December.  We booked the accommodation, we were going to have a great pre-Christmas weekend in Melbourne.

We saw Lance at his Box HIll rooms that day.  We went to Doncaster after that.  Had lunch in the foodcourt and a bit of a browse around (Pete was there, shopping was limited).  That's the last time there was a trip to Melbourne without pain and sadness.

I really thought after that visit we were in the clear.  I thought we would be out of the woods until her next surgery - which might have been a year or 2 away.  I started dreaming about a little girl who actually grew older.  Did I get too cocky? Maybe I let the guard down.

I promise I'm back and will share some stories of happy things and travel and the like.  But this is where it is at today.

A day in the life...Saturday 8th June

The ease of the iPhone camera and instagram and a battery I kept forgetting to charge meant that I was not giving my SLR much love in the last few weeks.

On the list of things to do one day was to complete a "day in the life" project - the natural extension of Project Life but instead of taking one photo a day, a day of taking photos.  To document the special and the mundane to view life through the lens.  A way of reconnecting with a real camera.

Shared the thought with my blogging/project life-ing/photographing/desserting friend petitpixeldesign and the challenge was set.  We just won't 'fess up that we delayed the day by 24 hours when we forgot to get started first thing Friday morning.

A winter-y Saturday in Bendigo with a chill in the air, dappled weakened sun and a farmer's market - a festival for the camera.

Over 175 shots for the day - even with a couple of lazy do-nothing hours in the middle that didn't attract much camera attention.  Made me realise there is so much to capture.  And given me a goal to learn to make my presentation as pretty as Petit Pixels

Here's some faves 

scooter fall

I'll be the lawyer dad

the exciting purchase from the square market

old green bean coffee and crochet

mid-winter Marks street

twitter time

making yet another iMovie

hallway football

juggling

checking out the garmin stats

off on a ride

Playdough time

The excitement that your aunt brings you sushi from Melbourne (and then refuses to be in the photos)

Masterchef reactions to dinner

A little trip planning

And then it was the end of the day, time for some reality TV

It's been a while

It's been a while since I have written here.

I got a bit worried that there were too many words about the darling baby that I missed so much, that I was becoming too monotonous.

Even thought my head is constantly full of thoughts about Thomasina, what happened when she was here, what would it be like if she was still here now, I began to notice that she wasn't in the thoughts of the rest of the world so much.  I thought I had to pull back to make others comfortable.

Life went on.  Other people had births.  Other people had deaths.  Other things got tough.  People stopped asking.  People stopped mentioning.

I tried to make the words dry up.

There were other things to do, too many things to do.  Too much of other peoples crap to deal with.

But that absolutely devastating sadness remains.  I go about my day, everyday, but Miss T is never far from my thoughts.  A sight, a sound, a smell fills my head with memories and loss.  A coincidence, a comment means it bubbles to the surface.

I feel like I am a volcano with molten lava bubbling under the surface, kept down my constant use of "mindfulness" living in the moment, "glass half full", "cognitive behaviour therapy".  The effort of getting through a day, making sure I don't upset anyone around me.

There are sweet spots, times when people show amazing kindness.  My friends who send random messages and links to let me know they are thinking about Thommy - a dress they think she would have rocked, something she would have had in her room, a photo of Harper Beckham pointing out Miss T would have worn that outfit better.  Tears at seeing the dolls pram that would have been perfect for Miss T right about now.  The thoughtfulness of an acquaintance who takes the time to mention "I am so glad I got to meet Thomasina".

For each of those, there are many, many more times when I have to hide my hurt, my upset faced with yet another act of thoughtlessness.  Do you think how it feels to me to hear about the illness or death of an elderly person who lived a long life.  Do you think how it feels to me to hear about someone with a sleepless or not feeling too flash baby - at least they have a baby that is alive.  Have you even noticed that some days are so hard.  Have you ever offered if there is something you could do to make it a little easier.

Sometimes I feel like a cartoon of a crumbling mountain - you know the scene where the cracks appear and then it crumbles to the ground in a pile.  Sometimes I fantasise about what it would be like to let the cracks spread.  What would happen if I just let the crumbling happen and didn't get out of bed.  Instead I just keep dealing with each little crack, keep putting one foot in front of the other.

I had a really rough day one day last week.  Some random things happening which meant Miss T was closer in my thoughts than some days.  And then something else went wrong.  Things bubbled up.

Made me realise that I had let slip some things that help control the bubbling.  A couple of months of missing my massages, missed gym sessions and not writing here.  I now know that I need to make sure I set aside time for these things.  To help manage the pain.  To focus on the sweet spots.

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