Wednesday, March 25, 2015

My Survivor

Nico was my Litle Fighter. Brooklyn is my Survivor. Literally and figuratively.

What does death look like, feel like, taste like to a 6 year old? I  still have no idea. But here is how Brooklyn has been dealing with losing her brother.

When she came from school That Day, she dropped her bag in her room and sat at the bench for a snack. "Where's Nico??" was quite LITERALLY the first thing she said. "We 'll talk about it after your snack" we told her. "But just where is he?" "Just eat, darling"

I had called our Family Support Worker at Very Special Kids to get some input on how we should tackle this. Don't say passed away. Don't mention sleeping in any context. Say died and explain why/how.

"So,you know how Nico's body didn't work very well? And how his lungs were really not strong? (she nods and tells/shows us how her lungs are REALLY strong) ''And you know lungs and breathing are really important? Well today Nico's lungs stopped working and he died. The doctors couldn't help him anymore. And he died. The ambulance had to take him away so he isn't here anymore and they're not going to bring him back"

She had a little cry. She gave us big cuddles and she went off to the playroom. I have no memory of suggesting she do it, but the next thing she did was go and draw a picture of the four of us. She turned and said "So... Did the ambulance just take Nico to hospital.... or did he really die?" I told her he had died and the ambulance took him to another place, not the hospital. After that, she drew one of just herself with us and told me this was her new little family. I wanted to scream. I wasn't processing this quite as quickly as she was.

So proud of her baby brother!

She tells me she misses him regularly. She tells me she doesn't want anyone else in her family to die. But she does these both in a matter of fact way. Not a distressed way.

She's more than happy to talk about him, if he didn't come up on conversation at least twice a week I'd be surprised. She knows he's not "off limits" and that she won't make us sad or mad by talking about him. We laugh about things he would do, we point out things he would love. It makes my heart happy to have her so comfortable... But it worried me too. I don't want her to be The Girl Whose Brother Died. And then this happened:

At the end of last school year, she spent an afternoon with her next class and teacher. I asked her about the day and she said "We had tell about who we lived with and who was in our family. I said I didn't have any brothers or sisters and it was you, me and Dad"

My heart shattered to a million pieces... But I scrambled to put them back together and smiled  "That's fine darling, why did you decide to say that?" And her response couldn't have been more simple "I just didn't want to tell about Nico". That a (then) 6 year old already has the intrinsic sense of privacy and withholding things for certain situations and audiences...

She has carried so much on her just-turned-7 old shoulders since she was 18 months old. Me being in hospital for the best part of a month before Nico. 7 plus months of me farming her to friends for half the day while I visited Nico... 2 days short of 4 years living with her brother who needed our full care, whose needs had to outweigh hers 80% of the time and whose appointments she was dragged to with little complaint. You'd think that would be enough for her to have some kind of issues, resentment or rebellion towards us or life in general. Now add coming home from school to be told that her brother, whom she loved so dearly and fiercely protected had died.

'I wish Nico was happy' written on the whiteboard in his room during a hospital stay.
I look at her playing, alone or with friends and more often than not, I just think WOW. She has always been easy, from the day she was born but still... How is she still just the easygoing, cruisy child she always been? Don't say it's her parents... I honestly just don't believe that's true.

However it happened, I am glad, it makes my heart warm and helps us through this journey too.

We love you Princess Brooklyn, all the way.


Thursday, December 11, 2014


I'm on a train. Like right now as I type this, I'm sitting on a train. We just went past The Hospital and I just wanted to be there. With Nico.
I'd swap this  "easier" life in a heartbeat for a lifetime of hospital stays. (Totally unfair to Nico... But  allowed to be selfish here)
For 50,000 sleepless nights.
For a house filled with hoists, tracks and equipment.
For 1,000,000 feeding tubes and nappy changes.

And I'm so angry right now. Angry that instead I'm on a train, heading to the city for work with replays of That Day in my head. Wondering why he didn't go back to That Hospital when he died. Why South Melbourne. Remembering sitting outside in the back yard to avoid seeing him being taken away. Trying hard to remember what toy we sent with him and feeling sick at how lonely he would be.

I feel like I'm going through these steps of grief in all the wrong order. I've done shock. I've done acceptance. Now I'm back at Anger.

Sunday, November 16, 2014

Circus Tears

Standing in the line at a Christmas circus yesterday, a girl of about 10 years old rolls up behind us in a power chair. I make small talk with her and her dad but make no mention of the rush of Nico-based questions that have just come at me. His daughter had good speech and much greater motor function than Nico's. Did this girl have CP or some other reason for the chair? Would he have had a power chair? How did her parents juggle everything? Instead we chatted about our girls liking One Direction and how close Christmas was. It felt nice, having my own little memories. Nostalgic rather than sad.

We got ushered into the Spiegeltent by Rudolph and some manly elves with cartoonish squeaky voices. We sat down at a table and Brooklyn went and sat by the roped off stage on the floor. Instinctively I looked for the girl we had just met, to make sure she had been given equal opportunity to get up close and am glad that she was. Then I am distracted by another girl in a manual wheelchair, much closer to Nico's age and from my outsider view, similar physical limitations. I try and keep my gaze in the opposite direction - the warm fuzzies become painful prickles behind my eyes.

'It's a circus, chin up love' I tell myself as the music and shouting that invariably starts these kinds of clowning acrobatic shows begins.

The elves arrive on stage with a bang and a crash, climbing a freestanding ladder, balancing on it, using it like stilts and swaying until they fall and the children all laugh and clap in delight. I catch the mum of the second girl in the corner of my eye, using the IPad looking device to communicate with her daughter and the hotness in my eyes begs relief and they burst silently into a waterfall of tears.

My favourite thing about Nico was his reaction to humour. Especially this kind of visual slapstick, completely predictable, loud kind of crazy. Falling. Chasing. Jumping. Without fail it all caused him to give a whole body chuckle. It started with an anticipation tense of the his arms and huge grin, then an inhaled squeal of enjoyments before the real giggle started. I could have been in the foulest mood ever imaginable but seeing/ hearing that would end it instantly and I couldn't help but laugh along. He would have LOVED this circus. He would have loved It and he was not here.

I don't have visual thoughts, people say they can 'see' a memory, or 'see' a plan/ vision. I can't. I remember things, but they stay thoughts. I can look at a plan and understand it, but I can't see it. I can read a book and imagine what it describes but I almost never SEE it like I have been told others do. Moments like this, all I want to do is see him. I kick myself for not having hours of video footage of every smile and laugh. Sometime, it seems, that realisation is too much and my eyes explode.

I used to be that neurotic mum who sat in doctors rooms, convinced there was something wrong with her baby because he cries (screams) in pain all day and flexed every muscle for hours. .

Now I am that neurotic mum who sits at a circus and cries while acrobatic clowns dressed as Christmas elves (in too tight shorts and suspenders)  flex their muscles on stage.

It's been six months today. I am pretty impressed that this was my first spontaneous combustion in a public place actually.

Sunday, October 12, 2014

Forever Four

I don't know if you're five today
Or if you're forever four
I don't know if your hair gets long
Or if you've grown a little more

I don't know if you're starting school
I don't know where you'll play
I don't know if there'll be birthday cake
If you're five not four today...

Will angels sing Happy Birthday?
Will there be streamers everywhere?
Will you watch us send you your balloons
As they travel through the air?

Are you partying with Ethan?
Will you give Alana a kiss?
And Ariana and all the bubs
Their parents have to miss.

I hope you're running free today
I hope you're dancing up above
I hope someone's looking after you
And each day you feel our love

But if you're four not five today
I'll be glad you don't change at all
Then I'll know your face forever stays
As that painting on our wall

Happy Birthday to my Nico star
With my heart forever raw
I miss you every single day
Mister Five / Forever Four

Tuesday, August 19, 2014

3 months after

3 months.
Almost 13 weeks.
Almost 100 days but its no exaggeration to say feels like yesterday.
There is no waking hour that passes where I don't have a thought of him skip across my mind. Sometimes it lingers and dances for a while.
Sometimes it just keeps on moving. 
I hear his inhaled laugh so clearly that I even feel the whole body-shake that went along with it.
I tiptoe through the house in the middle of the night in an effort not to wake him with sudden noises in the silence.. then I remember. 
I move the rear view mirror and momentarily get confused why Brooklyn is on the 'wrong' side of the car.
I take the stairs as Brooklyn races down zig zagging ramps, knowing I should be zooming Nico and his chair down that ramp and he should be squealing in delight.
I see the wheelchair logo on car parks, or a Kia Carnival (the car we were planning to have converted) and he is instantly brought to mind.
I cross paths with an ambulance and every time I take a deep breath and ponder where they might be going and has another family's life just stood still and been ripped apart .
I see a police uniform and suddenly vivid recollections of ambos and officers swarming in through the front door. 
On holiday in Cairns, 2013.

I never had a vision of Nico beyond early childhood. It was all so unknown, it was impossible to see anything beyond the next month. No matter how hard I tried, I just couldn't see him being too heavy to lift or too long to hold on our lap. There was a possibility he would go from nappies to 'incontinence aids'  and we would be changing a fully grown man. It was likely he was not going to master eating foods and the PEG was going to sustain him into old age. It was unknown whether he would gain enough mobility to move to a power chair or have a walker around the house. With so many unknowns, my brain would simply shut down and literally give me nothing but a continuation of things exactly how they were, a 14kg, 95cm beautiful child and nothing else. Usually its an 'old' person we lose in our lives and it's perfectly logical to keep them at the age they were in our mind. A child though, it's impossible to escape from trying to age them as you go on with your life. It's only been three months so I can only imagine this getting trickier as time goes on.

Time: Time has become a double a double edged sword... it is, we are told, going to make this whole thing easier... but I am more concerned with time making it worse.

I don't want the memories fade with time. I want them all. I never want a day to come where I can't remember every one of his different smiles, or hear the giggle. I'm petrified time will take that all away.

(For those who are worried about us: there is no need. Honestly we are continuing to live, we are actually coping fairly well at a day to day level. We have had a holiday and Brooklyn is doing fantastic... this is just a blog written on a crappy day and while it is all real and true... it is not everything)


Monday, August 11, 2014

Guilt in grief

For smiling and laughing.

For working and functioning and talking to people in such a normal manner they would never have guessed the traumatic event you're going through.

For walking past a bedroom door without flinching.

For not realising it's Friday again and not thinking  'It's been 9 weeks'.

For even just wondering when you will make it past the 16th of the month without counting it off. (Will you only do month counts until one year? Or will it be sooner? Or longer?)

For smiling when remembering the laughter the speed bumps on this road caused.

For not having any idea how to answer the question 'How many children do you have?'

For feeling like an attention seeker deciding to mention your child's (recent) death to someone new.

For going on holiday and remembering how much more difficult the airport was last time, with wheelchairs, feeding pumps and 10 litres of ready made formula.

For being able to watch this video and feel warmth and smile as well as cry.


Saturday, July 12, 2014

New normal

The week after that day was a bit of a blur... but everyone was AMAZING!

We got a friend to rally the troops that night and had several wines, tears and giggles. The thought of being alone in our house with the 3 of us, it just didn't feel right. The next few days were spent in a haze of dealing with coroners and the funeral director. My family had book their flights and were arriving Monday night but with no word from the coroner on when they would release Nico, we were feeling a bit stressed at the possibility of Nico not being at the funeral (due to needing a proper autopsy) but decided it had to be on Friday regardless so there was a lot of back and forward. Our lovely neighbour helped us fit the family into our house by letting our housemate move into their caravan for the week and Brooklyn was excited to sleep in Nico's room in the 'cool' hospital bed that goes up and down.

Friends were calling to lock in times to come and see us, flowers were arriving every few hours and the sideboard was covered in cards. It was like Grand Central Station with all the comings and goings and our kitchen was overflowing with groceries, meals and baking. It was heartwarming and so much more appreciated than I could ever express.

After the funeral was over and my family had left, we ran away to Woodend, just out of Melbourne to a farm where Very Special Kids have two cottages (houses really) for their families to use. We had a friend and her two kids come for the first few days. We weren't ready to go from surrounded by people to totally alone - we thought it would be a better transition, especially for Brooklyn if we eased our way down to that. And after a few more days of being there with just our little family... we came home.

Walking in the door again felt like being suffocated. I found myself walking the long way around the house to avoid Nico's bedroom. Everything was just quiet. There was nothing I HAD to do any more. I knew within hours that I was going to be calling work on Monday and asking to come back immediately... and I did. Just every second day.

Monday was fine. Wednesday was good... and then it was Friday. By this time Geoff had completely emptied Nico's room, painted and set it up as my office, just because he wanted to be doing something. I started work at 9 am just fine, but when it reached 9.30, it was all too deja vu. Friday, That Day was a Friday and I was working at 930 That Day. Nico's funeral was on a Friday. How?? How could Nico have died 3 weeks ago, and we had his funeral 2 weeks ago, and now its been 3 weeks and I have been back a week already AND his room is an office?  I took a few minutes to compose myself and told my boss that today may just have to be a half day. I got through it but I didn't feel right.  Its that whole notion that the world is meant to stop again. How dare I, of all people, how dare I be back at work and going about my business like everything was right in the world when clearly it was not.

Now its been almost two months. Two months without our little man. I still think of him every hour of the day, yes literally. Not in a I-just-want-to-cry way but more like a dull constant ache as I live my New Normal.

Tuesday, July 1, 2014

Miracle. Angel. Star.

There is a whole post to write before this one... But that one will take time as it will encompass the last 6 weeks and how life goes from normal, to upside down and back to new-normal. This one is about one day that goes from normal to amazing. So it comes first

Nico was born a miracle. We knew this from day one. He held on until the day I ticked over to 24 weeks and all 700g of him fought to show the doctors he was worth fighting for. He showed off and had to have the 'best' of the ICU machinery. He didn't care for the regular ventilation.... He wanted the one that gave him 900 breaths so fast his body shook. Why let the nurses put a drip in your limbs when it would look so much cooler in your skull. He earnt a reputation early on in the NICU as being a trouble maker and never doing what was expected.... Good or bad. He had to do it his way instead. This pattern pretty much continued the rest of his too-short life.

Bored of miracle and hero status... Nico chose to graduate to Angel earlier than anyone would have wished. But it seems Angel was not high enough a title for our Mr Monster...

About a week after Nico died, I got a text from a friend telling me she had some spare tickets to a gala night in about a months time and she'd like us to have them. Obviously she was worried we would hide in the house and was trying to get us out with this kind gesture, and we were happy to say yes. A few extra friends said they were coming too and we thought nothing of it.

As the date approached and we got more info, we found it was a fundraiser for Humanitarian Clowns. I thought briefly it was weird for someone to get free tickets to a fundraiser... Especially as it was a 2 course meal, not just entry to a band or something, but then I figured her friend was part of the Association and slipped her a couple of freebies.

On the night, we turned up and there was a buzz of  'Oh, this is Nicole's table, follow me, let me take you through, welcome welcome!' And we were taken to front and centre table - yay - good to know someone on the inside! Had we have been the first to arrive, I may have noticed our prettier table cloth, nicer vase and wine glasses which may or may not have been on the other tables... considering it was a BYO event. A fairy approached us several times ensuring we were all happy and advising us they had wine and beer for us if we wanted. Still no alarm bells ringing that at a BYO event we paid nothing for, there were free drinks offered. I genuinely thought it was either the same as everyone or because my friend Nic knew one of the girls. Dessert got brought to our table on plates... Yet everyone else was lining up. I noticed allllllll these things. And still I thought nothing much of it. I didn't even find it weird that an absent friend, for no apparent reason text me saying she hoped we were having a fantastic night AND commented on FB that she wished she was there. I just thought she was having a crappy night at work.

After /during desert, Tim who founded the Humanitarian Clowns did a presentation of their history and work. There were trips to Africa, treks through India, helping houseless people in Melbourne and now their new Random Acts of Clowness in memory of Tyler Shaw who was killed in a car accident. Geoff and I were quietly weeping during all this, then as we are trying to wipe away tears as you could feel the speech closing we hear something along the lines of:

"And there are some special people here tonight who don't even know why they are here... Why they are receiving the VIP treatment..." (Penny is still not entirely dropping but it is wobbling) " when we heard of the loss of their son Nico we had to do something for them... So Kazz and Geoff, we have bought a star in Nico's name.....(no idea what else was said here) ... And also for your daughter, we heard she loves to dance so we have organised a year of dance classes and also a beautiful fairy dancing dress"

I can't even start to explain how amazing, surreal and beautiful it all was or is... So I won't even try. I just hope my amazing friend who organised this, Tim and his Humantarian Clowns my other amazing friends who kept it from me, please just know how much we appreciate it and love them xxxx (and all the rest who had nothing to do with this too... But you'll get a different blog post soon)

He has always been a star, but now he is a real one and we have a certificate to prove it. It can't giggle the magical giggle I miss so much. I can't give it the hugs I desperately want to give again... but it can twinkle in the sky and remind us he is never gone.

Nico has completed his journey from Miracle to Angel to Star...


Monday, June 9, 2014

The world does not stop, but pockets of it do.

When Opa, my grandfather, died... I distinctly remember looking out his second floor window, down to the busy intersection that connected Sassenheim to the freeway and feeling so... disrespected. The most lovely man, the man so important in everyone's life, had just died and these people were just driving off to work, supermarkets, school, friends houses or wherever they were headed, like nothing had happened. It didn't make any sense to me even at 22 years old, that the entire town did not just shut down like I felt it should have.

On what is now referred to as 'that day' I had no view of 'Outside', literally or otherwise. We live in a quiet cul-de-sac with a view of farmland. I didn't know what was happening Outside, and that reminded me that Outside also had no idea of what was happening Inside. Then a message popped up on my phone with a Facebook post from a family member sharing love and condolences. My life since Nico's birth has been lived out on Facebook since actually getting out and about was difficult and our network of day to day (some may call them 'real life') friends shrunk and interaction on Facebook increased even with closest friends. I knew there was no way that would slip past people, even if it was on my own timeline. I contemplated deleting it, not for my sake but for others. Then I decided to put myself first and leave it there instead. I didn't want to call people, I didn't want to write a Facebook status. I just wanted everyone to know without ME doing anything.

It took a grand total of 3 minutes. Less time than walking to the letter box and checking for post, before messages flooded in via Facebook, SMS and phone calls. I didn't read Facebook messages at the time, I glanced at a few SMS messages and I only answered my phone a handful of times. It probably sounds really annoying, and later when I read them, people apologised at the start of the message because they felt they were invading my space somehow.

The messages and the calls, they didn't make me 'happy' and nothing could have consoled me... but what they DID do was make me feel like there were little pockets of the world (outside my immediate family) where just for a moment, something shifted and time stood still along side mine.


Saturday, May 31, 2014

The Day the Fight Stopped

Trigger warning: child passing. Direct recount.

It's odd I haven't written for 2 years. I just lost my drive... Lost the time... Felt like it was all so monotonous, there wasn't much point. Only two major events happened. Nico started kindergarten at a special school last year and was enjoying it mostly. Hated drop off time but was gone 5 minutes later. He was in ICU again last winter. Pneumonia again but worse. He was intubated and sedated (induced coma on life support basically) for 4 days. But he came good... As he always did.

Until 2 weeks ago. Writing this is my therapy. My road to healing. Stop reading now if you don't want to know how the world as you know it can change in a split second. That scenes you only see in movies ... They happen.

Every story can start with the phrase "It was just a normal day" and yes, it really was. Except that Nico had 'slept well' (we hadn't heard anything since 1am), the morning was the usual before school run about: lunches, hair, "Mum, where's my book bag??" type of day before my husband dropped Brooklyn to school. Nico was still sleeping and I was due to start work at 930. I logged in a little early to see if it was busy. I contemplated waking Nico but decided against it- a child needs their sleep. I messaged my team and asked about the morning and since they needed me, I jumped into the system. Geoff got home, sat down with a coffee and asked if he should go wake Nico. I shrugged and he gave it 10 more minutes. Between calls, I hear him open the door, make a weird yelp and yell "No! Oh my god! KAZZ!!!!" and I froze. That instant parental paranoia panic hit and I scream back at him "DONT!! You don't yell like that you freak me out!!" I scold him as walk in ... My husband... my big, ex-rugby playing husband ... hunched over the bed rail. Sobbing. "He's gone. He's cold. He's gone". Me clawing past to get the bed side down... Not understanding... Sure there's been a mistake. There was no mistake.  I run. I grab Geoff's phone and I run. Dialling 911 (yes... 911... Don't ask!) I run down our drive knowing I can't speak, making I-don't-know-what sounds but I'm not crying... I'm just howling in shock and disbelief. I don't hear the person answering's words. I'm halfway to the neighbours. "Ummm. Sorry. I don't know. My son. He's 4. I think he's dead" and I just howl and keep running. My neighbour opens the door and I just shove the phone in her face. "Nico" is all I can get out. And I run home with her tow.

It feels like the ambulance is there before we are... I know it's impossible but I have no idea what happened in between. I just huff and puff pacing around my house trying hard to keep myself breathing. Going anywhere but in that room. The ambos don't take long to come back out and tell us there was nothing they could do and he'd been gone for hours.

The howling was replaced by more human crying and tears now. I called my mum. I still couldn't speak but you can't really text your mother that kind of thing. Between sobs I told her  "Nico. We. Lost. Nico." And she just handed me to dad. I spluttered the same staccato words. He heard but didn't understand me. I envisaged him wondering how we could possibly lose a child in a wheelchair. Then the penny dropped.

Next there are police ... Two, then four... Then 8. They tell us it's all just procedure and they're so sorry to have to be there. They're uncomfortable. They don't know what to say. I feel like a robot or a zombie. I'm functioning but I'm not there. They tell us how the station stops when they get these type of call outs. An officer stands guard at Nico's door. Two take us to the lounge to get as much info as we can give. I rattle off the major points of Nico's history with precision. It's something that rattles off my tongue in chronological order with ease, I've been doing it for 4 years.

Born at 24 weeks.
7/8 months in NICU.
Ventilated for 10 weeks.
PDA ligation at 6 weeks.
Bilateral hernia repairs.
CP diagnosed at 10/11 months. Non verbal and no real controlled movement
Multiple hospital admissions.
PEG inserted at 1 12 years old
ICU in April 2012 and June 2013.
Intubated only that 2nd time....

The police officer just looks at me. He looks at the ground. He shakes his head in sadness. I think he understands: we never pictured our troublesome little fighter to go like this. We knew it was likely he could go before us. We just thought it would be the way he came into the world... Surrounded by a flurry of doctors and nurses and beeping machines.

We thought we would have time.

We thought we would get warning.

We thought would be 'prepared' - a ridiculous notion.

There is no preparation. No one could prepare for their heart to be ripped from their body like this. Warning would not have helped.