Sunday, 15 December 2013

Sweet Child O' Mine

When I wrote my last post, I intended it to be my last for 2013. But, over the last few weeks, things have happened which have left me feeling, I dunno, lost. I guess I wanted to write this post because I don't know how I'm feeling and writing helps me figure these things out.

Before I start, I need to say, that 99% of me is incredibly grateful to have my son. I am fortunate I was able to conceive a child, I am fortunate he survived the stroke and I am fortunate he is doing brilliantly in terms of his development. There are so many people doing it tougher than us. But more and more, I'm discovering, it's impossible to be grateful all the time. Now and then, that pesky 1% rears its ugly head, it makes me feel pissed off and completely overwhelmed.

It all started a few weeks ago, when Max had a paradoxical reaction to the pre-med he had, before his Botox. Although I've been with him throughout numerous unpleasant medical procedures, this reaction was right up there as one of the worst. I can't describe how it feels to see your child screaming and thrashing around so violently. I god damn hated the fact I couldn't do anything to make it better. I couldn't give him a cuddle, kiss his 'owie' and send him on his way. All I could do, was be there for him, completely powerless, utterly useless. I expected, that after a good nights sleep, I'd forget about the whole shebang. Shit happens, life goes on and I've dealt with these kinda crappy situations before. But, it's now been a few weeks and I'm still feeling pissed off that my baby has to go through these things.

A week later, we were back at RCH for an appointment with the eye doctors. Max's right eye turns outward and this is reviewed every few months. I absolutely loathe the eye clinic. The waiting time is long and waiting rooms + hyperactive toddler = mummy go cray-cray. Then there's the eye drops he has to have before seeing the Opthamologist. They sting and he can't see properly for hours, which makes him understandably cheesed off. The outcome is always the same, he'll have surgery to correct the eye, once he's old enough to do a comprehensive assessment (it's all about measuring exact angles of eyeballs, that's about all I understand!)

At the last appointment, it was suggested we try putting a patch on his left eye, to force his right eye to work a bit harder. See the risk is, if his right eye is slacking off all the time, it will start losing vision. I told the doctor it would be all but impossible to keep a patch on his eye for any significant length of time. I know that sounds like I'm a complete defeatist, but I know my kid. The doc wasn't fazed, he explained that vision loss was rare anyway and said we'd review it in a few months.

So, I've rocked up to the next review, prepared for the wait, prepared for the nasty eye drops and prepared to hear the same crap all over again. I wasn't prepared to be told that his vision was deteriorating. My little boy was going blind in his right eye. I was shattered.

It's now essential that Max wears a patch over his left eye for 2 hours each day. 2 whole hours. I despairingly asked the woman how the f*** would I convince a 2 year old to co-operate with this. She suggested I stick stickers on it. Admittedly, I was a total bitch when I told her that stickers were a stupid idea, when he wouldn't be able to see them anyway. I could feel the lump in my throat and being the type who hates crying in public, we took the patches and left.

The next day, I summoned every ounce of positive enthusiasm I could muster and we tried on the patch. I wore a patch too, I sang our favorite pirate song, I talked like a pirate (which normally amuses him), I danced like a pirate, whilst Rob clapped and cheered to spur him on. He ripped it off, we put it back on, he ripped it off, we put it back on. After one measly minute, the patch had completely lost its stick. The longest it stayed on, was around 3 seconds. Since that day, we've tried every approach we can think of and the longest it's stayed on was 10 seconds. The only options I have left, is (a) gaffer tape the darn thing to his head or, (b) put him in a straight jacket.

Arrrrrr, see Max? Being a pirate is cool ok? No? Damn.

By this stage, I'm kinda hystrionic, thinking my son is going to go blind and it's all my fault. See that's the thing, despite having an amazing support crew, it all comes down to me. I'm the person who spends the most time with Max and it's my responsibility to stay on top of these things. My family and Rob do an amazing job with him, but at the end of the day it all boils down to me. If his right
hand function doesn't improve, it's my fault. If his vision continues to deteriorate, it's my fault. If his language development remains below par, then that's my fault too (etc). Most of the time, I'm ok with that but right now, I'm tired of the pressure. I want to worry about all the normal bullshit, that other parents do.

(But I digress, thanks to the joys of google, social media and our amazing EI worker, we're developing a Plan B for the eye patching. Watch this space)

Which brings me to the final issue, which is Max's behavior. This is something I've been hesitant about writing about in depth, for 2 reasons- (1) It's really hard to find the right words to describe it, and (2) I'm tired of hearing "it's just a boy thing", "he sounds like a normal toddler" or "he'll grow out of it". I know people say these things with good intentions, and maybe they're right, but unless their child has a brain injury, I wish they'd all just shut up.

I've tried to go with the 'normal toddler' thing, but deep down, I've always felt something was different. I'm the person who's taken him to gymbaroo, music, dancing, swimming and play groups. I've taken him to every single class or group and every single time I've witnessed the same thing. Max is different from the other toddlers.

His energy levels make the other toddlers look listless. Whilst the other toddlers can focus on a task for a brief time, Max lasts about 3 seconds before he's off and running again. When the other parents are sitting down, sipping coffee, I'm the parent who's stopping her child from (a) playing in the toilet, (b) running out the front door, (c) ripping out the indoor plants, (d) trying to pull paintings off the wall, (e) grabbing and throwing piles of brochures, (f) throwing everything in general and knocking someone unconscious, and (g) I can't be bothered listing any more. Overall, his behavior is normal toddler behavior, but it's extreme. Far more extreme.

The most frustrating part is, I'm the person who cops the absolute worst of his behavior and I'm the person, he listens to the least. I know, I know, this part is normal but I'm tired of people smugly telling me what strategies have worked for them. You know what? I've tried that too and a zillion other strategies you'd probably never even thought of and he doesn't listen to me. Any kind of reaction he gets from me, is hilarious to him, regardless of how angry I might be.

My best strategy is to try to keep a poker face, remain emotionally neutral and talk him through the situation. It doesn't necessarily solve the problem, but it usually stops him from escalating. I'm acutely aware of the fact that I often look like a totally crap parent, because I appear to be ignoring his behavior. It's particularly unhelpful when other people decide to intervene instead. Yep thanks strange lady at Woolworths, now that you've told my son off for throwing things off the shelf, he's going to spend this entire god damn shopping trip doing exactly that.

The throwing. Oh my god. The throwing. If you're new to this blog, you wouldn't know about Max's pathological throwing problem. Read this

My latest injury. Lump on the head courtesy of Max throwing a hard, wooden train station at me

I can see the raised eyebrows we get, not only from strangers, but from those who are close to us as well. I know my parenting skills are criticized when I'm not around and I know I'm blamed for my son being out of control. I wish someone would just pat me on the back and say "I know he's difficult, I know you're trying your best and you're doing a good job". If people spent a week being Max's mother, they might reevaluate their expertise.

I've casually mentioned this stuff to Max's doctors at every review, knowing I'd be told "he's a normal toddler" and "it's too early to assess whether this has a Neurological basis anyway". I just wanted it noted that this is an ongoing issue.

We've recently started working with Jen, an OT from the RCH Rehab services and thus far, every session has been a disaster. Last week, Jen contacted our Early Intervention worker Caroline to express her concerns about Max's behavior. Jen plans to have him reviewed by Neuropsychology so we can assess whether his behaviors have a Neurological cause. I'm incredibly relieved that finally someone else can see it and doesn't blame me. Even though I've long seen it coming, I'm pretty scared about the diagnosis I strongly suspect they'll eventually make. But we'll deal with that if and when it happens.

Jen also expressed concern that I was burning out and struggling to cope. She's right on that one too. I am struggling and I'm not coping. I'm not a crier, but lately I've cried every single day. I hate it all, and I want the world to stop turning so I get off for awhile. I'm overwhelmed and very alone.

None of these recent events is a huge deal in the grand scheme of life. They're just stumbling blocks along the way. I know many people who deal with far greater things than I do and I really don't want to be a whining sook.

Max is my universe and he's the silver lining to every storm cloud I encounter. I love him more than I ever imagined I could love a person. He's charismatic, confident, mischievous, loaded with character and struts to the beat of his own drum. I always wanted my child to be an independent thinker and not a person who follows the crowd. I definitely got my wish. Time will pass, I'll get my head around things and life will go on. But for now? Just go easy on me ok?


  1. Hi, my name is Amanda and I am the mum of a stroke kid.

    Our little girl was 4 when she had her event which paralysed her right side, itook all speech and she was even unable swallow. I read your story and cried, not because I feel sorry for you but because it was like you read my diary. Keep going, if you like the movie Nemo, then just keep swimming.

    Our little girl is almost eight, at school and progress at age level. I promise you its worth it and ohhh I know its hard, I really do.

    Let yourself cry, I remember it took 2 years for me to shed a tear.

    Just keep swimming, and email me if you need anything from Brisbane.

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