A trip to the park should be a cosy, heartwarming affair. Right? Giggly squeals from small rosy-cheeked faces. Little fingers clutching at blue rope that's inclined to give you rope burn if you hold on too tight (or have to haul your not-so-little self up by). I used to offer silent blessings to the park-gods for every half hour killed at the play area with the small people in my stay-at-home-mum days. I also used to smugly survey my winning-at-life-ness when it was always everyone else's kids starting toddler wars or causing general chaos while mine politely waited their turn on the slide, or offered to help push tiny ones on the swings.

Oh, how the tables have turned. Now, an outing to the park resembles the Hunger Games. Except instead of being the person running from the threat of death, I am the one trying to rein it in. Yes, that near death experience is, in fact, my child. My child with a myriad of complexities. My child who sees the world entirely upside-down compared to most other kids. My child who has no concept of social etiquette and                                         causes utter chaos wherever we go.

Today was particularly harsh. We had to give B extra meds as his seizures have been more frequent and quite distressing for him of late. I hate making that call, but it's one of the many hats you wear as the parent of a special needs kiddo; nurse, arse-wiper, parent, advocate, legal professional, MI5-level researcher, educator... the list goes on. All seizure meds come with sizeable side effects- they're all essentially brain drugs. And since the brain is the control centre for the rest of the body, the additional issues created by neuro drugs can be pretty much anything.

Whether it was due to the seizures themselves, or the benzo we had to administer to negate the seizures, B was on a hellish rage today. No one was safe, and we all sustained BRIs (B-related injuries). Those are the times I wish he had some form of communicating what was going on his fuzzy little head. It's so hard to curb natural instincts and not respond in anger when someone is repeatedly targeting you (and your other kids) forcefully and physically. And yet, putting myself in his shoes, how shit must it be to be subject to brain fog and seizures and all manner of madness, and not be able to ask for help, or effectively convey what's happening? I can't justify getting angry when the claw marks on my face and neck are actually just reflections of the hideous internal battle raging in my boy.

So bank holiday Monday was rough for us. The coveted family outing ended up in tears - and mainly mine. We managed a tricky hike down to the secluded beach of Worbarrow Bay; opting for the lesser populated beaches minimises the general stress of managing other people's responses in addition to the regular shit. B sat in the buggy to watch the thunderous waves, which he really enjoyed for all of ten minutes. And then we had to hike back, with a very grumpy shouty boy, and three other slightly frazzled, slightly stressed out kids who forever seem to be at the mercy of their brother's needs. The stubborn fuck-this-shit bit of me insisted we try a coffee in an actual real life coffee shop, which just exacerbated the pandemonium. B literally screamed blue murder while S attempted a necessary pad change - and carried on once he was sorted - meaning the lounging holiday hipsters got way more entertainment than their usual avo-on-sourdough with a hint of chilli and lime.

Every day's an adventure. And some days, the adventure morphs into the Hunger Games and becomes survival of the fittest. Those are the days you find out exactly how unfit you are....


  1. I just want to tell you you are amazing as parents..B has the most amazing smile.D O and B are all well adjusted caring girls .sending love to you all .


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