I'm a mum of four, but I'm so much more than that. This blog is a glimpse into my mad world-the frustrations, joys and heartache of raising four kiddies, one of whom is particularly special, and trying not to lose myself along the way. Join me on my journey, I promise it'll be a hell of a ride!
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Surviving Summer (E1)
Summer Holiday Log Day One, 24th July 2017
We appear to have been invaded by body snatchers. My normally polite, nice (if feisty) children have been swapped out for incessantly hungry, incessantly bored little shits who do nothing but try and punch each other and mouth off at every other human in the vicinity.
Today I was solo with all four, although the Teen Queen had made her own plans, which was both helpful and not since she's the best bet for sensible.
Attempted Moors Valley. B highly unimpressed and wanted to sit in his buggy and be pushed around like a Lord. Trying to help him on the play trail resulted in crushed arse cheeks and wood-chipped knees, not to mention the indignity of crawling round in the mud while trying to save every other kid that got too close from being pinched. Drama Diva and Little Miss Mouth amused themselves by sometimes playing together nicely and sometimes screaming at each other.
Drama Diva has suddenly decided she needs an opinion on EVERYTHING, and that her opinion is always right. I'm hoping it's almost-12-year-old hormones and nothing more sinister, but fuck me that shit is draining. AT-TI-TUDE! I threatened to leave by way of consequence at one point before realising that actually caused me way more inconvenience than her... *sigh*
Got stuck in a traffic jam on the way home. B isn't great in the car if it's not moving, so traffic jams are not fun. His coping mechanism? Drown out the not-fun-car experience by shoving his fingers down his throat and making himself throw up. Cue much frantic screaming from Little Miss Mouth as we threw various toys in his direction to distract him, all of which epically failed.
Little Miss Mouth discovered at shower time that the green body wash is not best recommended for nethers. The convo went like this...
'Mum, my vagina is cold. Feels like it's in an ice cube or something.'
*pause for reflection*
'I think it must be that minty tea tree shower gel I used. Yeah, probably that.'
Every day's a school day.
So then, a successful Monday. Everyone survived. I kept my shit together. Mostly. I even made salad for tea. #supermum
But seriously. SIX FUCKING WEEKS?! Send help. And vodka. And very possibly other mind altering substances...
Sorry not sorry for the angry undertone of my title. We've been struggling with a seizure shitstorm for the past while. I say we for a reason. Epilepsy takes no prisoners in relation to who it affects, and although B bears the brunt of the brainfuckery, the whole family reaps the unsavoury results.
Usually, when someone mentions seizure, the first thing that springs to mind for most people is the classic jerking fit. B has (thank fuck) only ever had a handful of these. Before my up close and personal encounter with the epilepsy hellscape I would have thought the exact same thing. But it's a myth. The reality is seizures can present in a million different ways; it's like the ultimate hundred-headed beast.
Considering our very existence boils down to billions of electrical signals being fired at lightning speed inside our heads, it's not surprising that when it all goes to shit, this could pretty much mean anything in terms of what actually happens. Everything is contro…
Today was the dreaded budget review. For those of you not familiar with acronyms, let me throw out a few that will confuse the fuck out of you as much as they did me the first time I heard them.
NHS: National Health Service (gentle start, bear with me)
CHC- Continuing Health Care: a package of care allocated to those deemed worthy. Usually decided with the help of a (rapidly changing) 'standardised' assessment tool by Panel Gods*
CCG- Clinical Commissioning Group: The local NHS group responsible for the CHC pot of funding. Other responsibilities include recruiting 'appropriate' Panel Gods*
EBD- Emotional and Behavioural Difficulties: NOT my kid being a shit. Genuine issues.
SLD and complex needs- Severe Learning Disabilities and complex needs: I think if you look this one up there's a photo of B right there.
ASD-Autism Spectrum Disorder: a neuro-developmental disorder comprising primarily social and sensory difficulties.
SLT- Senior Leadership Team: School Gods…
On Tuesday, B's carer (who is an all round legend at all things B) brought him back early from after-school respite because his peg had split. A peg (stands for percutaneous endoscopic gastrostomy, if you're interested) is a tube that goes directly into a child's tummy, to allow parents and carers to administer meds and feed.
We initially had one fitted a couple of years back when B's seizures were crazy and we couldn't
medicate him orally- at which point he was having upwards of 70 seizures daily. Poor kid was totally non-functional and lost a lot of previously gained skills. The epilepsy B is affected by as a result of his chromosome condition is life threatening; he has many different types of seizure and because of this it's often very difficult to find a mix of meds that fully controls it. The peg has literally been a lifesaver for him- we're now able to medicate and instead of 70+ seizures daily we now typically see a handful of small ones, which have…