Farewell Princess Malli

In November, 2002, I'd just finished my University Degrees, moved out of home and was about to start my first full-time job. I was 22, I had the world at my feet and I knew everything.

One day I went to the shopping centre to buy myself a bed, but instead, I came home with a puppy. I'd wandered through the pet shop and fallen instantly in love with her. She was half malamute, half Rottweiler and she was only 8 weeks old. The staff at the shop, called her 'The Malli' and the name kinda stuck. I walked out of the shop beaming and cuddling her in my arms. It was the stupidest, most impulsive decision I've probably ever made but one, I've never regretted.





I learnt pretty quickly that Malamutes are....well....kinda totally nuts. Malli destroyed everything, she pooped on everything and she jumped on everyone. In less than a week, my new housemates asked us both to leave.

We moved into our first proper rental home, me, Malli and the new(ish) boyfriend. It was the perfect house for an ever-growing, kinda psycho large breed dog.....a 2 bedroom townhouse with a small courtyard.

To make up for the shitty lack of space, I took Malli everywhere and when I had to leave her at home she was allowed to roam the entire house. Her favourite place of all was our balcony. She loved socializing with the people walking past, she'd drag various bits of 'treasure' outside and drop it down to them as gifts (stuffed toys= ok, giant bones= kinda scary, a vibrator= um?)

The even bigger mistake though, was moving in with new(ish) boyfriend, who quickly revealed himself to be a big(ish) dickhead. I don't know how many times Malli and I huddled up together in the bedroom, waiting for him to finish destroying the house. It was one of the lowest points of my life & it would take me over 2 years to find the courage to leave.

Those would be the only times in the early days, when that giant, fluffy psycho dog would sit calmly. I'd cry, feeling like the loneliest person on earth and she'd put her big fluffy head on my lap. I don't know how many times I nuzzled into that fur and howled. She was the only one who knew how miserable life really was.

I don't think anyone could ever quite figure out why I put up with Malli. Her sense of adventure was a constant (and expensive) headache. She went through a stage where she escaped so many times, the pound had me on speed dial. A few times, she barged open neighbors doors and joined them at their dinner table. She jumped in a neighbors pool, she 'played' with another neighbors guinea pig and almost caused a few car accidents. She was a terror but she was my terror.

I went to Sydney one weekend and my housemate made a batch of hash cookies. They were reportedly so strong that one cookie rendered them too stoned to notice Malli polishing off the rest of the tray. Malli spent a night in ICU and had the munchies for a week (I was not impressed).


Over the last month, we have been backwards and forth from the Vet because Malli had something up her nose. The diagnosis changed so many times from (1) innocuous grass seed, and (2) Cancer. She had a few minor surgeries, and after one, she deteriorated rapidly. Last Friday, she stared at me with an expression that I'd never seen from her before. She was telling me that it was almost time to say goodbye. At that moment, I knew I didn't need a second opinion.

My last duty to her was to make sure that she didn't suffer and abandon my selfish need to save her life at all costs. So last Sunday, I said goodbye to my crazy, lovable furball. The last thing she did was lay her head in my arms and close her eyes. For one last time, I nuzzled into her big fluffy head and when she closed her eyes, I cried.

Rest in Peace my Malli Princess.
Thank you for being there when no one else could. You are gone but you will never be forgotten.





Malli
2002-2012

This one's for the Daddies

I feel like taking a break from the usual blogging stuff, to do a random parenting post. I've written about the first few weeks of parenthood before (*if I knew how, I'd insert link here______*) but this one is especially for the first time daddies. Enjoy.

- be extremely careful about the jokes you make to the mummy. They may seem funny to you and under usual circumstances, the mummy might find them funny BUT.....we're exhausted, our 'bits' hurt (or Caesar wounds), it hurts when we poo and we're leaking fluid from every orifice. The hormones we had when we were pregnant have gone and they've been replaced by new, highly anxious and obsessional ones. When the baby cries, it makes us unbearably anxious and we are powerless against it. When the baby isn't crying, we're anxious about the next time the baby starts crying. We can't help it, it's what our bodies were programmed to do & we will calm down. As a general rule, "when in doubt, don't say it". Now let's see if you're still paying attention. Boobies.

- If you're like the majority of blokes, you won't have read a single parenting book during the pregnancy (skimming through it doesn't count). If this is the case, then please, "Shut the f*ck up". We aren't experts but we've probably educated ourselves a bit more on the topic then you have. We have the final say and you must go along with it. End of story. Are you still reading or are you skimming? Tittie fart.

- It is highly unlikely that we want to hear your mothers opinion, so don't share it. It may be gospel to you but it isn't for us. Nor do we give a shit about "Jason from works missus" or some parenting story you saw on TV. If you notice this one, then you must be actually paying attention. Giant norgs. Furthermore, if you want to continue breathing, never ever compare us to another mother, unless you're saying we are better.

- 'doing nothing time' no longer exists. We appreciate that it'd be really nice to come home from your place of employment and pop your feet up in front of the TV. That was in the good ol' days before baby, not now. You see, we've also been working all day, we don't often get a break and we are probably covered in baby puke. It's unlikely that we've showered, eaten or pooed. We're emotionally drained, our bodies hurt and we're deprived of sleep. We resent you, for spending the day away and having simple luxuries like an uninterrupted lunch, even though we don't wanna trade places. If you're still reading this, I'm impressed. Doodle doodle ball bag.

- Sex. We don't want it right now, it's the furthest thing from our minds. Imagine that a tiny balloon was inserted in the tip of your penis. Imagining it? Good. Now imagine this balloon being inflated to the size of our baby and tearing your penis to shreads. Ooh. That sounds nice doesn't it? You'd be scared to pee now wouldn't you?* You will have sex again and you won't die in the meantime. Instead, you can stroke our hair, rub our necks and tell us we're awesome. It'll improve your chances of getting laid later down the track.
*you'll want to argue this point by saying that we don't give birth through our peehole-correct. But our cervix is roughly the same size as a matchstick and look what comes out of it. If you still want to argue, shut up.

I could probably keep going on this topic forever. But given that you've probably been forced to read this and you have an important Playstation game to get back to, I'll stop. Just remember "this too shall pass". Life will get easier, you will get laid again and we will get saner. We just need a little TLC and help from you.

Penis.

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Dr Hamish and Dr Meredith

This is Doctor Hamish-





My sister Kylie bought him for Max, the morning after his stroke. We named him after the ICU Registrar who cared for Max that day. Out of the zillion toys Max has, for me, Dr Hamish is the most precious. He was the first toy Max had on the cot he would call home, for the next 6 weeks.

It was the 3rd of June, 2011. That afternoon Max had his first EEG and his first MRI scan. The plan was, that after he had the MRI, they would start reducing his sedation and 'wake him up'. They were hopeful he would start breathing alone, so they could take him off life support.

I didn't go with Max to the MRI. He was escorted by about 8 doctors/nurses already and heavily sedated, so I took the chance to grab some time alone.

I spent most of that time perusing the gift shop at the hospital. I wanted to find the perfect toy to hang on the other side of his cot. I wanted him to have something nice to look at when he woke up. I don't know how, but my mind was blank and racing, all at the same time (is that even possible??)

After half an hour or so of staring blankly at toys, I bought him this-





I named it Dr Meredith after the ICU Consultant. Dr Meredith was the doctor who had the job of telling us, our son had suffered a massive brain hemorrhage and probably had leukemia (thankfully he didn't). I'll always be grateful for her genuine compassion in delivering such shitful news. (Though, I have no idea why I chose a toy hippo when Dr Meredith was slim. Oops)

When Dr Meredith and I got back to ICU, we were met by another Dr with a hauntingly serious expression. Time was so critical, he didn't even take me to the 'bad news' room with couches and tissues. Brain damage, constant seizures, brain dangerously swelling, inducing a coma now. I clutched Dr Meredith, with a fear far greater than anything I'd ever felt before. Inside, I was howling hysterically, outwardly, I was paralyzed and emotionless.

Earlier this week, Max and I were at the brand new children's hospital. We had a bit of time to kill, so we checked out the new gift shop. There was a whole wall of Dr Meredith and Dr Hamish toys. Just one look at those toys and I remembered 'that' day with such ferocity, I burst into tears. Right there, in the middle of the gift shop, I sobbed and not a single happy thought could stop it.

On June the 3rd, 2011, I faced the very real possibility that my son would never wake up again. I will never forget how lucky I am that he did.





I love you Max xxx

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Max turns one!

Max has finally hit the big 1. We made it and here are some pics to prove it!




A bath before his party to wash the weet bix out of his ears, lol.




His amazing cake, donated by the gorgeous Mel at 'La-De-Da Cakes'.




Opening some presents with Aunty Tara




We also celebrated my grand-fathers 90th birthday. Max junior is comparing hair with Max Senior in this one!



The best shot I managed to get of Max with his cake.




The morning of his actual birthday, riding his very first bike.





Birthday breakfast at Nan and Pa's house.



Hanging with the Meetcats at Werribee Zoo.








Riding on the safari bus!




Fast asleep after a huge day!

Thank you to my wonderful family for organizing Max's party. Once again, I can't find the words to fully express my gratitude. It was an amazing day.

The best part of Max's birthday was holding him in my arms at 734pm, the exact time he was born. He was fast asleep & it was a perfect moment in time that I'll always treasure. Thank you Max for giving me the happiest year of my life xxx


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Calling All Australian Parents with Special Needs Children

In my previous post, I spoke about my conversation with Mr Peter McLean from FaHCSIA. He informed me that annually there are 100 infants Australia wide, who's parents qualify for Carer Payment. To quote "hopefully there aren't others that need it".

It's been almost a week since we spoke and I am STILL waiting for him to provide an example of an infant who would qualify. Is it that hard to figure out which boxes to tick that add up to the magical 85 points?

I have had so many people contact me in various ways and told me of their personal struggles qualifying for Carer Payments. I am urging you to contact me again at infantsspecialneeds@gmail.com, and I will forward these stories to Mr McLean. Your message can be as long or short as you like.

If you don't have any personal experience, can you please share this blog post, so that as many people as possible have the opportunity to speak up?

Even if the legislation is eventually changed, it will be too late to help us. However, I don't want other parents to be in the same predicament. It's hard enough, having a child with special needs without having to fight so damn hard for assistance.

We all know that there are far more than 100 infants in Australia with 'significant additional needs', I just need to prove it.


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Australia has 100 infants with special needs

Yesterday I finally spoke with Mr Peter McLean from the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA). Mr McLean is the Section Manager for Carer Payments, in the Disability and Carer Payments Policy Branch.

It was apparent very early in the conversation, that Mr McLean had no intention of acknowledging any flaws in the current system. The whole process was revised in recent years and should now be fine n' dandy, thank you very much.

Mr McLean then proceeded to tell me that every year there are 100 infants, under the age of 12 months who's parents qualify for Carer Payment. He said it with such exhuberance, he actually seemed proud of that statistic. When I told him that 100 cases, Australia wide didn't seem a lot, he said "well hopefully there aren't other babies that need it".

Excuse me Mr McLean? Do you seriously think that in a country with a population nearing 23,000,000, there are only 100 infants that have significant additional needs? On average, there are 250,000 babies born every year in Australia. That's pretty darn impressive if only 100 of those babies have special needs. Are you living in the merry old land of OZ Mr McLean?

I agree that the line needs to be drawn somewhere but it's pretty clear that currently the bar is set too high. At the moment, I can choose to work longer hours and pay my rent, or I can spend more time with my son and give him a chance of a 'normal' life. If Early Intervention is the key, why are parents made to wait so long for Government Assistance?

So many people have contacted me and told me of their struggles, I can't stop fighting now. This isn't about Max and I, this is about every family in the same predicament. I have forwarded him our petition and urged him to read the comments.

For the rest of this week, I will be focusing 100% of my energy on Max's birthday. Tomorrow he will be turning 1 and he deserves nothing less than my full attention.

But after that? Watch this space.

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I am not a spastic

Take a moment, to pause and think about the word 'spastic'.


What images came to your mind?


When I typed 'spastic' into google images, this was one of the pictures that came up-





Pretty gruesome yes?

I'm going to admit something, I haven't previously spoken openly about.

Max has spasticity.
If I was to be politically incorrect, I could say that Max is a spastic.


I've never spoken about this with anyone other than our physiotherapist. Not because I'm ashamed to admit it, but because I'm frightened of Max being ridiculed and labelled. Somehow, it feels like if I don't talk about it, it'll go away.


Tonight, I perused a few sites like Urban Dictionary and Yahoo! Answers. I typed into the search engine "what is a spastic?". These were some of the answers-

- It's when a person is mentally retarded
(voted the best answer)

- A complete retard who does not know what they are doing and make weird noises like "Muhhhrreerr"

And here's a joke-

- What do you call a spastic in a wheelchair?
Anything you want. They'll just smile and wanna hug you.

(Don't get me started about the 'r' word either)

The term spasticity, is defined 'related to or affected by muscle spasm'. Spasticity is a symptom of Neurological injury. My laymans explanation, is that the muscles in Max's arm/hand are pulling his arm into this kind of position-







Max's hand isn't as bad as the one in these pictures, but without therapy, it would be. The muscles in his affected arm, pull with incredible strength. A lot of the time, it's virtually impossible to uncurl his fingers. His wrist tends to turn inwards.

A strict regime of stretching and massage, is helping his arm maintain 'normal' movement. But, it's like pushing shit uphill. He adamantly protests when I do his stretches and if he resists, they are impossible to do because his muscles are even tighter. Lately, I've only been able to do it properly when he's in a deep sleep. Enter, the problem of deciding when he's in a 'deep sleep'. I've woken him so many times and then spent an extra hour resettling him back to sleep.

Do you know the arm action that people tend to use when they call someone a 'spastic'? When he cries, he flails his arms around and looks just like that.

Every parent fears that their child will be teased or bullied*. It completely f*cking sucks to know that my baby boy faces a life of cruel taunts, from stupid people. I know, he'll learn to deal with it, just like I will. But it still hurts every time I think about it.

*Although, I once knew a guy called Richard Pullar, I don't think his folks thought too hard about that.

The next time you consider using the word 'spastic' or 'spaz', please stop and think for a moment.




I am not a spastic.



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