Saturday, 25 March 2017
This will be the final post I write for 'Maxwell and Me'. I started writing this blog, when Max was still in hospital and he'd just moved from ICU up to the Neuro ward. It was around the time, when every day of that 6 week admission seemed to get longer and longer. A good friend of mine, suggested I start writing it all down and so 'Maxwell and Me' was born.
My mind was in a dark place back then, but I was hellbent on never admitting to that. My baby boy had brain damage and his future had become a big, fat question mark of 'wait and see'. I was terrified. The fear was such, that I could barely comprehend it myself, let alone communicate it to anyone else. Over the last 6 years, writing has given me the outlet to express all the things, I'd never be brave enough to say aloud.
In December 2016, we reached the business end of medical litigation proceedings which started way back in 2011. I learnt, that if living in June 2011 was tough, RE-living June 2011 was actually shit tons harder. In the weeks leading up to the Directions Hearing, I was able to read through the piles of progress notes and medical reports which had been submitted to the Court. Easily the most painful and confronting part of this entire fucking experience.
The good news though, is that on the 10th of March, this happened-
Recently, several things have happened, which have shown me just how far we've come. I've spent most of the last 6 years, feeling as though I was standing in front of a firing squad. There was nothing but stress bullets from every god damn direction. I've been broken, rebuilt and then broken again. But now? Now I feel like waving my hands in the air, yelling "Look at me!! I'm totally calm! I'm not bat-shit crazy anymore!!!"
(Edit. I'm possibly still bat-shit crazy)
Max turned 6 last week, he's in his second year at school, and his behaviour has become more manageable. Silvie, at 2 and a half, is the smartest kid I know and also her own unique brand of cray-cray. We have a kitten called George, a messy 70's style house and a backyard we play in for hours. I've started looking for a new job and I'm finally gunna start writing that book I've been promising to write. Maybe someday, I'll get brave and start dating again (haha, not likely).
Thank you to every single person who has followed this blog and supported us in various ways throughout this journey. I'm not sure I'd have found the strength to survive, if it weren't for the army of people standing in our corner.
Now, the time has come to close this chapter of my life and move on to the part where everyone lives happily ever after.......
........but that's another story.
Goodbye and thank you.
Over and out
Tuesday, 26 July 2016
I've never made secret of the fact, that neither of my children were planned. When Silvie was conceived back in 2014, I knew there was something special this child was going to teach me. I mean, what are the odds of a condom breaking on the EXACT same day I ovulate? It was fate and this little girl needed to enter my life.
For a long time, I didn't understand the reasons fate had chosen to impregnate me with version 2.0. Life was hard enough with Max. Life got even harder once Silvie was born. The sleep deprivation was enormous, the depression became profound and for the first time ever, I was crippled (yes, crippled) by anxiety.
I was already accustomed to carrying most of the load at home, but with an extra tiny human in the house, the pressure became unbearable. I sometimes wondered if the Universe had made a mistake. What was it trying to teach me, by breaking me entirely?
I felt trapped. Invisible bars around my house, the reality of living with family violence. I couldn't escape the yelling, the screaming, the constant put downs. I'll never forget the day I finally hit rock bottom.
That was when I started to see, all the beautiful things my daughter was here to show me. She looked up to me, I was her female role model and what was I teaching her? That it was ok to live with a man who abused and tormented her mother? I knew then, what I needed to do.
The last 12 months, I've spent rebuilding my sanity and preparing for our escape. I found my inner 'Sparkles' again and discovered that she's still pretty fabulous. Then, last month, with an Army of supporters, we left.
I'm choking up as I write this. I'll forever be indebted to the amazing people who have helped me in recent months (one very special person in particular). As well as my children, who gave me the strength to keep going, long after I decided to give up.
I understand, why my daughter chose me to be her mother. She has taught me that if she deserves better, than I deserve better too. I'm proud of the role model I am now. Freedom is a glorious thing and something I'll never take for granted again. It's a different kind of 'happily ever after' and that's a lesson I'm happy to teach her.
Life is good. The future looks brilliant.
Team Alpha Wolf Squadron. Over and out.
Sunday, 6 March 2016
As I sat down to write this post, Max suddenly launched himself off the coffee table, punched me in the sternum and ran off. That's my life. It changes quickly, without warning and people get hurt. Max's behaviour has regressed again over the last few weeks. The days have been long, stressful and highly unpredictable. I've recently started medication to help me manage my own anxiety.
Preparations for Max's schooling in 2017 are in full swing. We won't know if he is eligible for a Specialist School until he has completed a heap of assessments. Hopefully this will be done by July, but for the meantime, I'm stuck with the task of planning for both Mainstream and Special Schools. I'm grateful for those who forewarned me about how massive and complicated this would be.
A trial date for Max's Medical Litigation Case has been set for December of this year. This is something which has been bumbling along in the background of my life for the last 4 and a half years. I can't say much about the specifics of this, other than to say his case is strong (very strong).
As part of this, we're required to attend loads of appointments with various Independent specialists. The purpose of these appointments, is for them to assess the impact Max's stroke and make predictions about what his needs will be for the rest of his life.
Having to re-tell the story of Max's stroke, has bought up a whole lotta anger and sadness (for me). It's forced me to acknowledge the dark place our world became after that day. The dreams I had vs the way life has turned out. The never ending struggle to find silver linings and the strength to live another day.
Hearing the experts predictions about Max's future, hasn't been all that fun either. I knew they'd all be focusing on worst case scenario type stuff. Turns out the worst case scenario, is a fair bit worse than I expected.
There's no way I would be surviving this journey, if it wasn't for the support of my family. They are absolutely brilliant. Nonetheless, this journey is mine and mine alone. It's hard to describe the sense of feeling so unbelievably alone, when I'm rarely alone in the physical sense.
The optimist in me, wants to end this post on a positive note. There are loads of positives and I'm not one to wallow around in self pity. Everything will be alright and I know I'll survive, because I have no other choice. But that's all the positivity I can muster right now.
I promise I'll do better next time.
Over and out.
Sunday, 29 November 2015
Max's behavioural problems have dominated my life, since he was about 18 months old. That's 3 years of aggression, extreme hyperactivity, property damage, defiance, being deliberately antagonised, waking up at 430am and deflecting the missiles he throws at my head (I could go on, but you get the idea).
He is extremely oppositional. It's not the usual defiance you'd expect from a child his age. It is EXTREME. It is constant. It requires a truck load of patience and creativity to deal with. I carefully choose my battles. I don't request something of him unless I have every intention of following it through. I avoid escalating situations into power struggles, because (paradoxically) this only reinforces his defiance. Convincing him to do something, requires the skill and tactic of a hostage negotiator.
Max's brain injury, affects the left hemisphere of his brain. Which means he struggles to understand and retain language. Which means I repeat myself a lot. Like seriously. A LOT. For three years, I've been trying to teach him that we don't throw things at people. Yet, here we are, still apologising to random strangers who've almost been knocked unconscious by something Max threw.
A day or even an hour with Max is hard work and completely draining for those who care for him. Yet, I am the person who has lived with this every single day, for the last 3 years. Some days, it's 14 hours of just me, Silvie and Max. If it weren't for my family, I'd have been committed to the cuckoo house a long time ago.
I'm often told that "I'm the weak one", that "I shouldn't let him do this, that, blah, blah". A therapist who might spend an hour with him, can say "he listened when I told him". That's great. That's totally awesome that you're so talented at dealing with my son. Now, take him home with you and repeat your awesomeness for 14 hours a day, for the next three years. Then we'll talk.
So many people, see me as 'weak' when they spend time with us. Some people say it directly, more often than not, it's implied. You know what? I agree. I AM the weak one, when it comes to managing Max's behaviour. Because I'm the person who's running this marathon and I need to survive.
If that makes me weak, then make me a badge. I'll wear it with honour. Because if I don't survive, neither will Max.
Saturday, 17 October 2015
Why didn't you listen, when I told you things were getting worse? That the strategies weren't working. That I was often afraid of my own son.
Why didn't you listen, when I tried to explain how relentless it was? How nothing seemed to help? You always cut me off mid-sentence. You never allowed me the air space to convey how extreme things were.
Some of you told me it was just a 'boy thing'. Some of you told me 'he'd grow out of it'. Some of you told me stories about your own children. Some of you tried to convince me it was normal. You told me all the things I needed to be, to be his Mummy. You tried to send me to Parenting Classes.
Every night I laid in bed, trying to remember all the things I needed to do, to be a better Mum. Stay calm, even when he's destroying the house, pelting shoes at your face, throwing rocks at cars, hitting people and breaking things. Don't give in, even though the battles are occurring every god damn minute of every god damn day. Laugh it off Faith, this is hilarious, have a sense of humour about it. You're too weak, you need to be stronger. YOU NEED TO BE STRONGER. THIS IS ALL YOUR FAULT.
You finally listened, when I finally snapped. You said "I know it's hard but-" and I cut YOU off mid-sentence. I screamed at you, the words I've been screaming inside my head for the last few years "You don't know how hard it is. You have no idea how hard it is. It's not just 'hard', it's freakin' impossible. I can't keep living like this". You tried to talk. I didn't let you. I rambled hysterically for a good 5 minutes, before you managed to calm me down.
That was the day you finally listened. You referred Max to the Psych Team. A few months later, we met with a Child Psychiatrist and a whole bunch of others from the Psych Team. They all agreed the problems were severe. A few sessions later, we have some answers. Severe ADHD and most likely Autism. He needs medication, (at least for now), sensory profiling, an ASD assessment and language assessments.
When I look at Max now through an Autism 'lens' it all makes so much sense. For years, we've been instructed to treat a chest infection, with a bandaid. That is why nothing ever worked. I'll get over it, but right now? I'm so god damn angry.
We could've been helping him a lot sooner, if only you'd listened.
Monday, 28 September 2015
It was 9am on Sunday morning, when you heard my son calling me a fuckhead. You heard him say it several times. He said it every time he fell over. He said it every time he needed a drink. He said it aggressively. He said it loudly. I know you heard it. I could see how disgusted you were.
Your disgusted expression, is one I'm accustomed to seeing. I see it multiple times a day. Sometimes people come and tell me what he's saying. Sometimes I get unsolicited advice from total strangers. Mostly though, people sit back and give us the stink eye.
I know what you're thinking. You're thinking, why does she let him get away with that? Why isn't she giving him some stern warnings? Why isn't she dragging him back to the car and saying "Wait until your father hears about this"?. I know that 5 years ago, I would've thought that too. Unfortunately, those things would only cause his behaviour to escalate.
Your next thoughts, would be that this woman is such a bad mother. Maybe she's a drug addict. Maybe she's just lazy. This kid needs some discipline. That woman shouldn't be a mother.
What you don't know, is that my son has a brain injury and his behaviour has been out of control since he was 14 months old. Maybe you read generic parenting articles your friends post on Facebook. Maybe those articles give you all the ideas you need to keep your precious little snowflake in line.
I read research articles, books about brain injuries and email specialists from various parts of the world. We have appointments with Psychiatrists and Psychologists. He's 4 and a half years old, so far, nothing I've done and no one we've seen, has been able to make things better. Some days, it is relentless. Our 'good' days, would be a nightmare for most.
Perhaps, you think I shouldn't take my son to public places, when he's so wild. For the sake of other people, I should probably just lock him in a cage at home. That's much better right? But, skating is his outlet. What you witnessed, was actually the most calm he'd been all morning.
People think, the day of Max's stroke, was probably the worst day of my life, but it wasn't. That honour belongs to every single day, which has come after. Have you ever lived with an out of control child? He assaults me and his sister every day. He destroys our house and he destroys my parents house. If there really is a hell, then I am living in it.
I saw my son say hello to you. I saw you look down and ignore him. If you'd smiled and said hello back, you may have learnt, that my son is not a monster. Despite what you witnessed, he is also funny, charming, sweet and exceptionally endearing. It's impossible not to love him, if you can look past the other stuff.
This letter is not just for you, it's for every person who has stared, laughed or judged us over the years. I hope, that if you ever see us again, you might be able to smile at us. Because such a simple gesture of kindness, helps me to keep putting one foot, in front of the other.
I hope the rest of your Sunday, was an improvement on the time you spent in our presence.
That fuckhead mother from the Skate Park
Sunday, 9 August 2015
I didn't know there was truly such as thing as a 'nervous breakdown', until it happened to me. For years, I thought I could muddle through all this stress indefinitely, allowing myself to have a cry and then move on with it. I never expected things to build to the point, where I'd explode and break down and then wake up the next day STILL shaking and say "I'm done".
It happened one weekend, about 6 weeks ago, when I was at work. At work. The place which has long been my haven, the place I go to have some 'me time'. In hindsight, alarm bells should've been ringing the moment I started considering an acute psychiatric in-patient unit 'respite'. Especially when I'm often the person in charge, with minimal support from those in the Senior management stratosphere. I love my job, I have someone/s yelling at me all week and by the weekend, I'm ready to at least get paid to be someone's punching bag.
On this particular weekend, I was brain mushed by the end of my Saturday evening shift. Nothing major, just the cumulative effect of arrogant doctors and benign interruptions every 3.2 seconds. I'd been awake since 630am (a sleep in) and I just wanted to crawl into bed to scrape a few hours of sleep in, before I had to get up and do it all again the next day. But the sleep fairies weren't kind that night, the sleep fairies put in an epic combined effort and gave me precisely one hour of unbroken sleep. And nobody helped.
I contemplated calling in sick that morning. But I didn't. There was no one else to be in-charge and I didn't want to disappoint my boss. Instead, I skulled cold instant coffee, whilst Max screamed and screamed, begging me not to go to work. He cried so hard, he vomited. He's never cared that much about me going to work and it concerned me, that he was suddenly so anxious. I think I cried the entire way to work.
Most of my colleagues were kind to me that morning and so were our patients. I needed that. I needed everyone around me to just be nice or at least kinda nice. Because I felt completely broken. I was so tired, I was confused, and felt almost drunk. But I tried (gosh darn it, I tried so hard) to keep myself together, so I could finish off the shift. Not everyone was understanding of the fact that I was struggling. It continues to surprise me, in a profession where we care for those with mental illness, there are people who think it's ok to be a complete dick to their colleagues. Especially when their colleague has begged them repeatedly to ease off. It was those people, relentless in their complete dickness, who pushed me to snap. I was late getting home from work that day, and I got in trouble for that too.
I snapped so hard that day, I was still crying the next day. And the day after that. My heart wouldn't stop racing,my hands wouldn't stop shaking and the only words I could find to explain myself were "I'm done". I'm done with being abused. I'm done with accomodating people's dickness. I'm done with everything being so god damned hard.
6 weeks later, I wish I could tell you that I'd fixed every single problem and resolved every single stress, but it's still a work in progress. I'm finding simple things completely overwhelming, because it turns out, rock bottom isn't an easy place to climb back from.
But we'll get there.