Monday, 24 December 2012

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


  1. Wow. You are amazing, as is that resilient little boy of yours. Truly. Merry Christmas to you and yours, you all truly deserve a fantastic one.

  2. Thanks mate. Sending the Merriest of Christmasses your way too xxx

  3. Merry Christmas. Have a couple of serves of Christmas pudding and a few champers (or whatever takes your fancy) and enjoy every bloody minute.

  4. Keep fighting! For Max, for you, for your silver lining to return... Looks like you have a cheeky boy who's up for a challenge (ie. those steps in the pic!) and well worth the fight, even if just with the geriatric hydro therapy users! (They'd probably want to kick a "normal" looking person with MS like me out too!)
    Trish :-)