2012. The Year of the Dragon

Becoming a mother is one thing, becoming a mother to a child with special needs is another. There are always battles to be fought. This year, I've fought to change the legislation pertaining to Carer Payments for children under 3 (ish). You can read about it here- Babies have special needs too. I fought so damn hard but ultimately, failed to get the legislation even reviewed. I can't even begin to tell you how much that irks me.

I had discussions with Peter 'I don't care what his title is anymore' McLean, from FaHCSIA. By 'discussions', I mean, he told me about his wonderful system and ignored the concerns I was trying to convey. I also received a letter from the office of Jenny Macklin, which was a diplomatic load of plop, essentially saying, 'we don't give a toss'. At the very least, I hope, I've raised awareness of the issues facing carers of young children and maybe things will change in the future.

I've fought with local swimming pools, to allow Max in their hydro-therapy pools (WaterMarc, I'm looking at you). The warmer temperature in hydro pools is great rehab for his tight muscles. But, given Max is under the age of 18, it's quite likely, he'll throw a Corey Worthington'esque pool party and disrupt the ambience for others. The few times we have used it, I've been approached by annoying busy bodies  fellow pool users, telling me, he wasn't allowed to be there. Some days, I get a macabre kinda rush from saying "actually, he had a massive stroke and this is part of his rehab. HA!! You didn't expect me to say that now did you???" (Now tootle back to the Bingo Hall from whence you came).

I've also had arguments with various nurses, doctors and rude medical receptionists. I don't enter into any situation with the intention of causing conflict, but sometimes it's hard not to snap. It was the Immunisation Nurse at RCH who won the 'Medical A***hole of the year' award, for telling me I was inflicting more pain upon my child by not doing things her way. On the day of Max's stroke, I made a pact with myself that I would be with him for every single medical procedure. If he had to go through it, then (metaphorically), so did I. I've restrained him through a countless number of injections, I know what works and what hurts. Unfortunately for the Immunisation Nurse, it was on that particular day, I gave up being polite to medical professionals who sh*t me. She copped a mouthful of some of my finest snarl. I am now 'one of those mothers' and I couldn't give a fat rats clacker.

In 2012, the chronicity of this journey really started to sink in. In 2011, I survived on a crazy mix of denial, hope and various states of dissociation. In 2012, reality paid me a visit and knicked off with some of my warm n fuzzy, silver lined clouds. New problems are beginning to reveal themselves, I've really had to sit back and acknowledge that this is a marathon, not a sprint. I despise myself for the times I feel sad, when I have too much to be grateful for. I suppose no one can be strong all the time.

I'm loathe to admit, there were probably more lowlights than highlights in 2012. I thought my journey with Max had strengthened me to the point of being unbreakable. But, I broke, when I farewelled my dog Malli shortly after Easter (Farewell Princess Malli) I thought, having a 'human baby' would put everything into perspective but I was wrong. She wasn't 'just a dog', she was my heart, my lifeline, my strength. Her death has left me feeling empty and I think about her every day.

In 2012, someone helped me find a part of myself which had been missing for years. Whatever the future holds, I'll always be grateful to them, for listening when no one else could and helping to find a part of me, I thought, was lost forever. Their own resilience has inspired me and allowed me to see things in perspective. One single person, who craps all over the inspirational porn that regularly floods my Facebook news feed.

The highlights of 2012, were Max walking, his first birthday party, the CHASA retreat (Inaugural Australian CHASA retreat) and finally moving house (Thanks for the memories). I met some inspiring new people and developed closer friendships with old acquaintances. Max is talking more and more, he has me in fits of giggles every day. Currently, his favourite words are 'bum', 'car', 'gone', 'wow', 'mum', 'pooooooo' and 'nana'. He is obsessed with ceiling fans, brooms, cars, trains and (most recently) helicopters. He has a WHOLE lotta character, he is stubborn and determined to do things for himself- such as driving the car, um no baby, not just yet. Max can light up the room with his cheeky grin, and devilish sense of humour. He is a clown and he is a daredevil.

There are going to be some big changes in 2013. There needs to be. I'm bumping myself up on the list of priorities, although I don't yet have a plan of attack. Max will always be my number 1 priority, but somewhere amidst the chaos, I'm gunna make time for me.

In closing, I want to say thank you, to everyone who has supported us over the last 12 months. Knowing, there are so many people in our corner, helps so much. Max has a lot of hard work to do and he's at an age where he's resistive to therapy. It's hard to motivate him and even harder to watch him struggle. But, we've just gotta keep on, keepin on. What other choice is there?



The sky's the limit kiddo xxxx



Merry Christmas everyone xxxx

Wake up Sleepyhead

I started writing this blog, about 2 weeks after Max's stroke. A good friend suggested it might be cathartic to write about our experiences. It's also been a good way to disseminate information everyone wanted to know. In the first few weeks of writing, I wrote furiously to get all the facts down on paper before I forgot them. My early posts are pretty crappy and straight to the point. Over time, I've written a few 'flashback' posts, and talked about certain events in more detail. Which is exactly what this post is going to be....

Max spent about 2 days officially, in a medically induced coma. It was the only way, they could stop the seizures which was causing his brain to dangerously swell. It probably sounds strange, but I was grateful for those 2 comatose days. It gave me a chance to process everything which was going on. Every medical professional I spoke to in those 2 days, uttered the same phrase "we'll know more about his prognosis, once he's out of the coma". I was in no hurry for him to wake up, I was petrified of the reality we were going to face.

In those 2 days, I sat with him, with every intention of reading him stories and singing his favourite songs. I never did either of those things because I couldn't find the strength. Instead, I cleaned his eyes when they got mucky, I cleaned his mouth and kept his lips moist. Occasionally, I changed his nappy, although there wasn't much point because he had a catheter and his bowels were essentially 'paralyzed'.

The thing I did most of all, during those days, was think. I had no idea who my son would be when he woke up. By that stage, we knew he had permanent brain damage but didn't know how it would affect him. Would he be permanently paralyzed? Would he be dependent on me for the rest of his life? Would he be mentally handicapped? Would he ever do those 'normal' things that other parents take for granted? I feel a little ashamed, but the one thought which had the most air time, was 'I never signed up for this sh*t'.

Coming out of a coma is nothing like you see in the movies. On TV, the (beautifully made up) comatose patients eyelids flutter before they slowly open, they look at the person sitting lovingly by their bedside and stutter "wh-wh-at happened?".

In reality, the process is very long and extremely tedious. For 2 days, I'd basically seen, no signs of life from my baby. No twitching, no eyelid flutters, no response to anything. 100% of his breathing was done by a life support machine. Slowly, we started to see little twitches, his eyes started moving behind closed eyelids and every now and then, he breathed for himself. His eyes didn't flutter open like they do in the movies. They opened millimeter by millimeter, over the course of 24 hours. Once they were open, his gaze was vacant.

There's one particular photo, I look at fairly often which tells the story of how far we've come since last June. It was taken by my mother on the day Max started coming out of the coma. I don't think I took any photos on that day, because it hurt like hell. When I think back to that day, I still feel the stabbing pain in my heart.





It took days, maybe even weeks for the Thiopental (aka Coma drug), to wash out of his body. The doctors explained in laymans terms, Thiopental literally soaks into every fat and muscle cell of the body. It was going to take his little body awhile to rid itself of the drug (Incidentally, I later discovered, Thiopental is the first of the 3 lethal injections given in executions- I'm glad I didn't know that at the time).

Even after the Thiopental and pain killers were out of his system, Max was still a space cadet. He would've been happy lying in his cot all day and staring at the wall. Not once did I let him do that. When Max was awake, Max's brain was being stimulated somehow. We played music, read stories and took him for walks around the hospital. I was the crazy mummy, who took her baby to the Starlight room and joined in the art groups. Despite all of this, he was still pretty vague. I could bang saucepans only meters away from him and he wouldn't respond. Yet, we knew, his hearing was perfect.





After months of (slightly obsessive) researching, I started Max on the Snowdrop Program. He literally 'woke up' after only one day of the program. On Monday, I could carry him into the shops easy peasy. On Tuesday, he was a humanoid Octopus who tried to grab everything off the shelves.

Looking at him now, it's almost impossible to believe he's the same child. Check out these recent pictures, he is alert, hyperactive and incredibly mischievous.





















From a physical perspective, we still have a long way to go, but that's a whole other post. I have days, when the cheeky little sod is driving me batty and I have to remind myself of how far he's come. There aren't enough ways to say thank you to Andrew and the Snowdrop Program. It's my greatest wish, for us to travel to the UK, because there's one thing I really need to say to him in person. "Thank you for bringing my son back".



This isn't a sponsored post but for anyone wanting to know more about the program, here's the link-

Snowdrop for Brain Injured Children

The Inaugural Australian CHASA Retreat

When my mother was pregnant with me, my (then) 4 year old sister was diagnosed with cancer. She had a brain tumour, which thankfully responded to treatment. My sister was at the very first Camp Quality held in Australia and has remained a volunteer ever since. As a child, I was jealous, ooooh I was jealous, of all the awesome things she did at camp. It sounds stupid now, but as a child, I wished I had cancer too.

After seeing the positive impact Camp Quality had for my sister, I was eager for Max to have similar opportunities. I wanted him to meet other kids who've had strokes and will understand it, far more than I ever will. I searched online for hours trying to find similar organizations and found virtually nothing. One particular organisation, runs a camp for brain injured children and their families. However, due to limited funding, we've been knocked back from attending. Twice.

My online friends through  CHASA   have been an amazing support crew, who've helped me navigate my path on this journey. They hold a family retreat every year, but being an American organisation, it's held in (surprise surprise) America. The flight alone is kinda out of my price range.

Around a year ago, I bumped into some fellow Aussies on the CHASA page and we decided to organise our own retreat. This proved to be easier said than done. We'd message each other backwards and forwards for a few days, then we wouldn't chat again for a few months. Our lives were hectic, none of us had the time to organise a big retreat.

Eventually, we agreed we'd find a place, pick the dates and book. We'd worked out a lot of the details already through our previous discussions, so a week later, it was all locked in. We 'advertised' it on some CHASA pages and invited others to join us. But in the end, it was just 3 families who attended, and it was perfect. Finally meeting, Lucinda and Kerry, plus their families, was easily the highlight of my year.
We stayed at a Holiday Park on the border of NSW and Victoria. Here's a few pics.....




This is Lucinda and little Toby (2.5years old)




This is big Toby (4.5years) and his daddy













It looks pretty tropical and expensive, but it was just a nice Holiday Park, which was totally affordable. We chose to stay mid-week, so we could have an extra night without the extra cost and the park was beautifully quiet. Two of us stayed in poolside Villas, and another family camped Taj Mahal style. We'd tentatively planned a few places to visit, but every darn one of them was closed. Luckily, the jumping pillow and the swimming pool, kept the kiddos entertained.



Max and little Toby




Big Toby having a swim





If you look closely, you'll see all the boys in this photo (only just). It was sooooo hard getting pics of them together




Max enjoying the water, though we'd just had an argument over the dummy




I love this picture of big Toby at the park




Little Toby chillin by the pool with his daddy




Max was easily amused by the kitchen cupboards with no child proof locks. He's clapping himself here

The sunrises and sunsets were priceless....




If you stood on our veranda and looked right, you'd see the sunrise over lake Hume




Looking straight ahead from our Verandah




Looking left from our Verandah, it's sunrise over the pool


On our 2nd last day, Lucinda, Kerry and I had booked in for a deluxe pedicure (thanks Lucinda!!) with champagne and nibblies. I've never had a pedicure before and OMG it was bliss. The best part, was having one whole hour without the kidlets, so we could actually talk. It was the first time, any of us had truly spoken to another person about being the mummy of a 'hemi-kid'. It was the first time, I'd been in a room with other people who could truly understand. It was a small moment in time, where I didn't feel alone.







We all chose purple nail polish because it's the colour of Pediatric Stroke Awareness




I've always wanted to take a picture like this. Totally in heaven

On our final night, we tried one last time to get a picture of the three boys together.....




















At least they're all in the same frame

I think we all felt the sadness that came with having to say goodbye. I long for these families to live in Melbourne, so we can catch up more often. Instead, we're planning the next retreat, and it's going to be bigger and better. We all want our children to grow up, knowing they're not alone. So, if you're an Aussie hemi-parent reading this, put the dates on the calendar NOW- November 18th-22nd 2013. We'll announce more details soon.

In finishing, I'd like to say a huge thank you to Kerry and Lucinda, it was an honor to meet you both and I miss you already. Big apologies to Micky who was unable to attend because she's (inconveniently) about to have a baby. I'd like to send big cuddles to little Toby and big Toby, you both have such beautiful souls. Also, thanks to 'the daddies' Rob, Paul and Jason, not only was it lovely meeting you lads, I'm very thankful you looked after the boys so we could get pampered (maybe next year, we'll allow you a boys day out).

This final photo, was taken just before we said goodbye. I still get a lump in my throat when I look at it, because we were about to return to the loneliness of our reality. I know, this is only the beginning of a long lasting friendship and that thought alone, makes my heart smile.





See you next year ladies xxxx


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Dear Therapist

Dear Therapist,

Please excuse me for being grumpy with you these last few months. It's just that I'm so tired. and it's a kind of tired that sleep can't fix.

I'm tired of our sessions where you push my son, often until he cries. He's only 19 months and he's not training for the Olympics. I know better than anyone that he's strong willed, and I know he needs to be pushed. You take it too far.

Do you ever look at your own son and imagine him having special needs? I never imagined my son having special needs. Despite everything I have to be grateful for, my heart still aches every single day. It's a pain I can't describe, it wasn't meant to be this way.

I've told you so many times, he needs a little break between activities. He's so young, he can't stay focused for an entire hour. Can your toddler stay focused for a whole hour?
I'm not an overprotective mother and I'm firm with him when I need to be. However, I see no point in making it a miserable experience for him. He's going to need therapy for a very long time.

Do you ever wonder why my son won't go anywhere near you? He cuddles with his other workers but he doesn't like you. It's because every single time he goes near you, you restrain his good arm so he can't use it. I tell you every week to stop doing that. I will do the restraining because I know when he'll tolerate it. You never listen.

I'm tired of motivating my son to do therapy. I'm tired of him being so resistive. I'm tired of lying in bed at night thinking of sneaky ways of doing therapy. I'm tired of nurses, doctors and therapists who don't listen to me. I've been with him through every medical procedure and every therapy session. Please trust my judgement when I tell you what works.

I know that your care plans are mandated by a higher power. I think they're a crock of shit. You spring it on me without warning, it puts me on the spot and I struggle to think of what goals he needs to work on. He continually interrupts our conversation, so I never have any valuable input.

The only reason we keep seeing you, is because he needs to stay linked in with an Early Intervention Program. I don't know what his future holds and I can't sever ties with you just yet. I've come to dread our weekly sessions and it's no coincidence I haven't been there for the last few weeks. I know you're a nice person, but I'm so close to snapping and I don't want to do that. I know you're the expert in therapy but I'm the expert in Max.

Dear therapist. Please listen.

Thanks for the memories

We're moving house. If I knew how to post a link to an old post, I'd post it here ________. But since I can't, the post is called 'Watch this Space' and it's about how desperately I needed to move. Fast forward to now, and tonight is the last night we are spending in our old place.

Our new house is modern, it has real air conditioning and a big back yard. It's only 10 minutes away from my work and my family. I fell in love with it the very first time I went there.




Here's a picture. Nice huh?

It's a darn sight nicer than this shithole I've lived in for the last 5+ years. I've hated this house from the first moment I saw it but at the time, the rental market was tough. It was especially tough because I had a shocking rental history and a large hairy dog who destroyed things. We were so desperate to find a house, we even offered extra money for this craphole. Proximity to the city, is the only thing it's got going for it.

Despite my venomous disdain for this house, there's still a part of me that will be a little sad to say goodbye. It was in this house where I lay sobbing for hours/days/weeks after the ex suddenly up and left. It was here where two of my best friends unofficially moved in and helped me rediscover my confidence. I was in this house when I discovered I was pregnant. I was in this house when my waters broke. We bought Max home from hospital here, not once but twice. The first time as a newborn, the second after his 6 week stay in the Children's Hospital. It was here, where I sat cuddling my dogs Malli and Sebastian, knowing it would be the last moments we shared as a trio.

These walls have also seen some pretty shitty things, there are just as many crap memories I'll be glad to leave behind. Not to mention the hideous decor, I'll share with you now.



Tiled walls in kitchen, cat and lobster.




Heater which you need a Masters degree in Gas Appliances to operate.




Kitchen floor. Laminate tiles which are ugly and don't stay stuck.




Very odd tiny room. What you see here, is the entire room.




Tiny bathtub. Perfect for Max. Disastrous for an adult who might fancy a bath (the streaks on the wall at the top of the pic is bathtub paint, not blood)




It's a BYO mirror in this bathroom.




This is the view from the toilet seat. It's the gas for the hot water. Of course.




When I moved here, I left a beautiful suburb which was semi-rural. I was sad I couldn't hear the birds anymore, so mum bought over a few bird posters to fill the void. I often looked at them and thought "some day I'll fly away".

Finally I'm about to fly away and say goodbye to this piece-o-shit house on a bus stop. One last sleep, one last bleary eyed morning where I skid across the kitchen on a rogue laminate tile. I ain't gunna miss you house but I thank you, for being there for some of the greatest memories of my life.




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Go on, say it. I dare you.

I don't assimilate well with the mumsy crowd. For the sake of convenience, I usually attribute that to Max's stroke. The truth is though, I find most of them rather boring. I'd much prefer the company of a homicidal paranoid schizophrenic, then a Jersey Shore loving, Fox FM listening, fashionista. I'm not exaggerating.

Max is a social butterfly, he isn't the least bit shy and he likes to stop to chat with anyone he meets. Especially pretty ladies. So, I often find myself making small talk with the very people who would normally erk me to tears. "yeah he's cute....18 months....yes he is very blonde....no he didn't get that from me....yes his smile is gorgeous". Surprisingly to anyone who knows me well, I kinda enjoy it. I like meeting new people when I'm out with Max. I love how toddlers have no pre-conceived ideas about someone's personality based on race/religion/clothes (etc). I absolutely adore their lack of understanding about social norms. What I love the most though, is his attention span, "yes darling that person is quite dull, let's move on shall we?".

Today, we were at a play centre and I was dutifully following Max, making small talk with some slightly upper class mumsies. I struck up a conversation with one mummy, and instantly fell in love with her brutal honesty. Instead of the usual pleasantries, that send me off to snoozletown, we had a refreshingly honest chat about how annoying our kids were.

In the 5 minutes we spoke, we shared forbidden secrets. The type of things you don't openly admit to most people or they might dob you in to CPS. Things that make you feel guilty because you think you're the only mother who thinks them. And you know what? It felt goooooood.

We all love our kids more than any words can describe and I haven't met a parent yet who would have life any other way. But in those 5 minutes a load was lifted off my shoulders, I told that lady, things I don't tell many people. Who's brave enough to join me? Let's all cut the fluff for a moment and be flipping honest. I promise you, it feels fantastic.

My son is 18 months old, he's cute, he's blonde and he has a wicked grin. But you know what?

He is annoying as hell.





Yes, you're very clever darling, now stop.....hey, don't throw my bra in the rubbish bin and for the love of Jebus would you STOP chewing on my undies??!




Love you baby xxx


- Posted using BlogPress from my iPhone

Please don't eat my undies...

I've worked as a psychiatric nurse for almost 10 years and in that time, I've found myself saying some pretty strange things. For example-
(1) No. You are not a hobbit.
(2) Clark Kent is otherwise known as Superman, not 'Cyclops'.
(3) Why would the crystals be anywhere near your uterus?
(4) If you really are Jesus/Allah/Budha, why can't you get out of the psych ward?
(5) You don't need 'love' to have a shower, you need 'soap'. Got it? Soap.
(6) No. You are not an ATM.

(I could go on....)

But, since Max has entered toddlerhood, I've found myself saying things that pisses all over the bizarre stuff I'm used to. Most days, are 'one of those' days. He drives me mental, in a 'wouldn't have it any other way, kinda way'. I'm waiting for the day he looks at me, sighs and feably says "please don't _______". Once, he's down for the night and I've gathered the scraps of my precarious sanity back, I giggle. So, I thought I'd share some of our finest moments to date......

- Do not sweep the dog. Do not sweep mummy. Do not hit daddy with your broom. For the love of god, give me that broom!

- Why is the dog wearing spaghetti? Why is there a noodle on the dogs ear?

- Stop chewing my undies.

- Get your toe out of my nose.

- Please don't put your slobbery banana down my bra.

- Oi. Get my iPhone away from your doodle. NO! Don't rub the TV remote on your doodle instead.

- We are here to feed the ducks NOT swim in the lake with them.

- The toilet is not a toy.

- Does this look like Kings Cross to you? No? Then stop trying to eat food scraps from the bin.

- Why are you wedging that teaspoon between my boobs?

- We don't eat lint from the clothes dryer.

And the phrase that gets said the most?




"You're lucky you're cute"

Love you baby boy, don't go changing.