Saturday 11th April
Spent the entire day frantically working on the The Shit Shack, in time for the move on Friday/Saturday. We complete on the sale on Friday but we are assuming it may be Saturday before we have every thing fully shifted. The fact that the owners of The Shit Shack gave us "prior possession" as soon as our finance was approved has been a bloody god send and allowed us to hopefully have it in a livable condition by the weekend.
Even cleaning the windows took half a day. They didn't look too bad to the naked eye but my God the shite that came off them was horrifying. All the frames were thick with dirt and mold and it really became evident just how long it is since anyone has actually lived in it. I never got to the outsides because I ran out of time. Frankly the whole outside probably needs pressure washing, but that can wait until we are moved in. In fact I have a feeling I'm going to be regularly cleaning the place for weeks before I'm happy.
Greg went to IKEA (he was the only person there in a face mask) to get a kitchen cabinet for our cabinetless kitchen and then I had the exciting task of heading back to our current home and cleaning that from top to bottom in time for tomorrows final inspection by our buyer. I'm to old for this shit.
Sunday 12th April
After an exhausting day yesterday, scrubbing, cleaning, wiping and bleaching, Alice decided to go completely bananas at bedtime and was still up screaming, shouting and protesting the fact that she was expected to sleep at 1am. By which time I was so stressed and angry and just done in, that I couldn't sleep myself. So I sat up until gone 2am going back over her meds, supplements, food and routine to try and work out just what the fuck is going on with her right now.
At 4.30am my alarm goes off because one of my kids likes to press all the buttons on my alarm clock and mess with its settings.
At 7am I got up and sat on the loo crying. I'm almost 48 and I'm sat on the loo crying.
The inspection of our house was at 9am, so rather than have to deal with our Real Estate Agent, our buyers, a ferral Alice and myself on the verge of a nervous breakdown, we decided it best if I take Alice out for a walk in her buggy and Greg deal with the inspection on his own. It was looking a smart plan until after an hour they were still at the house and Alice was screaming to go home for the loo. Assuming they wouldn't be much longer, I thought Id risk it and go home, usher Alice past them all and get her on the loo. But its didn't go like that. Alice ran at the couple buying the house and then the Real Estate Agent throwing her arms around their waists and telling them she loved them. Usually we just let this go but in the new world order of COVID19, we told her to leave the nice people alone and just elbow bump. Of course she ignored us and after several requests and her now appearing to lick them, Greg had to physically unlock her small, but incredibly strong, hands from our guests. And at that point Satan arrived and joined the party.
Alice sits down in the middle of the driveway and shouts "FUCK YOU" over and over again. Then proceeds to lie on her back kicking her legs and banging her head on the concrete floor, all accentuated with louder and louder shouts of "Fuck You" on our quiet suburban street with everyone at home on Easter Sunday. The Underwood Freak Show is back in town.
Naturally everyone felt very uncomfortable quickly left and I went inside and cried again. It's only mid morning and I want to drink a bottle of wine and go back to bed.
After a very rough day, Alice passed out at 2pm (clearly staying up until 1am being a pain in the ass is tiring for her). I lay next to her wracking my brains and googling anything and everything that might give me an answers as to what the hell has gone so wrong lately. What the hell am I missing?
At 3.30pm she woke and Satan was once again here to party. I'm promptly kicked me in the stomach, pulled by the hair and told to "Get out!!!!". After a 15 minute meltdown of epic proportions we established that she had ear ache. After a further 15 minutes of yet more epic meltdown (the venue had now changed from bed to floor), she agreed to swallow a pain killer and have her temperature taken. I hid in the toilet, sat and cried.
When Alice calmed down she said "I'm trying to behave Mummy. I'm trying my hardest". She asked for a hug and my heart broke a little more than usual. I cried for the fourth time in less than 12 hours.
I don't even want to think about her bedtime routine tonight. I quite literally want to be that woman who fucks off when she says shes popping out for milk and never comes back.
I hate today. I hate NKH. I hate this life. Its so bad that today I actually hate people with normal kids. There I said it. I hate you and your normal lives. This is not how parenting should be and I fucking hate it.
Monday 13th April
Its seems we have hit the "lets shave out heads"! phase of Lockdown. I guess it was inevitable as I've seen this phenomenon happening in other parts of the world who are further ahead in the disease, but now it has reached our shores.
Greg let George loose with the clippers but when it came to returning the favour, George chickened out. The offer is on the table of a highly sought after Bey Blade Launcher if George will take the plunge. Right now its a firm "No" but I imagine that when George realises just what his hair (he inherited my thick Tina Turner wig like hair) looks like with a few months of not being tamed, I suspect he'll go for it.
Of course after we defuzzed Greg the inevitable argument came with Alice about why she couldn't have her head shaved. She was begging to have the same treatment as her Dad and I'm not even in any doubt that she would of loved it, but the problem would come the next day when she'd wake up and not understand why it hadn't come back. And then of course the meltdowns and panic attacks would ensue. I guess there is also the "Child Abuse" aspect of it and I'm not sure Id be looked upon favourably by the general public or any of the government bodies involved in her care.
Its one thing to have a blonde curly haired, blued eyed, beautiful 8 year old in a wheelchair swearing and behaving badly ("aah look at the sweet girl in a wheelchair, I'm sure she cant help it") but its a whole other bottle of medication to have what looks like a small neo nazi, with a fetish for daily wearing of swim googles in a wheelchair, shouting obscenities.
Where possible, more work was done on The Shack and at this stage we are still on track for fully moving in Friday/Saturday of this week.
Tuesday 14th April
Alices earache is back. Hopefully this is the fly in our Sodium Benzoate finally showing itself. Now with a normal child you just take them to a GP right? Not so with Alice. Firstly you have the issue of whether she will actually even consider going or not. Shes either super keen or point blank refuses.
Assuming shes in a 'super keen" type mood, you then have the inevitable panic attack in the car on the way there or if you have to wait for than 30 seconds in reception on arrival. Lets say we actually get her into a GPs office, it will almost always be one she has never seen before because as we all know, if you need an appointment with in a few hours of booking, you just take who ever you can get. If its something that's not urgent then we go to the Childrens Hospital anyway, so things that require a quick fix are always done by unfamiliar faces and invariably by doctors who don't have English as a first language. This added touch gives the whole thing another level of chaos to the already comedic shit show that doctors visits are for us. New faces are a disaster and trying to explain Alice and her complexities to a foreign national is even more fun.
For the purposes of this story lets assume we get into the doctors room without anyone needing stitches and we are now met by a lovely GP but with limited English. Alice now takes her cue to go full psycho whilst strapped into her wheelchair. I then have to shout at a volume most parents cant even reach without a microphone about what Non Ketotic Hyperglycinemia is. I explain that "no" it is not the same as Non Ketotic Hypoglycemia which is a completely different disease and "yes" I know they sound exactly the same and "no" I assure you you don't have a friend whose child has it, thats the other disease, and "no" its really not more common than I realise and "no" you don't need to check her blood sugar because that's not this disease that's the other one and "yes" I really do know what the fuck I'm talking about and for the last time SHE IS NOT FUCKING DIABETIC!!! Can you tell this isnt my first rodeo?
Anyway once we have established I do actually know what her base condition is and they have reluctantly accepted that have never heard of it (they still don't really believe me, I know they google it once I leave) we then have to run through all her history and symptoms. All the while, Alice rips at her hair, bites her arms, shouts "fuck you" and hits me if I'm daft enough to get with in swinging range or her tiny fists. Then the fun really starts. I'm often asked if I can stop her crying or can I perhaps get her to be quiet and sit for a physical exam. I usually do an involuntary snort when I hear this and then say something like "Sure, I just let her behave like this because its so enjoyable to watch".
They rarely appreciate the sarcasm.
At some point (usually when the GP feels a migraine coming on or blood pools in their ears) they realise this isn't going to get any better and pissing around with stickers, and lollies and asking her who her favourite Wiggle is, is wasted breath. Slowly my suggestion of "just getting on with this" starts to seem like the best option and between the two of us we pin her down and the GP attempts to forceably either look in her ears, down her throat or listen to her chest, depending on our chosen illness.
The outcome is pretty much always the same. One or both of us is bitten, usually me as Alice likes familiar meat and the GP concludes "Well I didn't really get a good enough look/listen so lets just give you some antibiotics as a precaution". The rest of the sentence they complete in their own head but I'm pretty sure its something like "Now please fuck off, don't darken my door again because I now need a double dose of Panadol for my throbbing head and bleeding ears"
I thank them for their time, Alice tells them she loves them (yes really) and without fail the GP looks at me with pity and sadness. They tilt their head and say "You really are doing an amazing job". Those are the words that come out their mouths but the bit that kills me is that isn't what their face says at all. Their face says "Holy fuck woman, how the hell do you do this? I pity you, I'm sad for you and I'm now eternally grateful I'm not you".
This might sound dramatic and self pitying but over the years I cant even tell you how many parents I know with kids like Alice who have experienced this exact same head tilt and comment, with lying eyes at every visit to a doctors surgery.
This scenario always concluded in the exact same way. I then to take 10 mins to sit in the car in tears, rocking like a lunatic while Alice tells me it was fun and she wants to go back inside and asks "why Mummy so sad"?
So did I take her to the doctors? Did I fuck! I started her on one of the multiple courses of antibiotics I keep at home for just this sort of fiasco.
Lets just hope they bloody work or I soon have to choose a GP from my "District" for tomorrows Reaping.
Wednesday to Friday16th to 18th April.
I'm going to do these three days as one block for a few reasons. Firstly the move to The Shit Shack took place and as such I had no time or desire to update my diary and secondly because things just got steadily worse with Alice and I went to rather dark place. I simply didn't want to write depressing drivel or ramble on about how shit things were, because we all read about enough depressing drivel as it is.
So the upshot of the second half of the week was this: Alices neurological issues went into over drive. The antibiotics I had at home did nothing. She went on to have several severe attacks of Chorea. If you aren't familiar with this, its the extreme and uncontrolled limb movements you see in Parkinsons and Huntingtons Disease. For Alice is also involves her face and she can be so badly hit that she can only lie on the floor, flapping like a fish on a boat, with her face contorted, while we talk her through it and hold her if she wants us too. These attacks last about 5 to 10 minutes, during which time she has no control of her body whatsoever. And that's the good bit. At least with a Chorea Episode she is coherent and usually quite happy. She will often assure us shes "Ok" while its happening or say something like "I cant stop wriggling". Whilst the words aren't clear, because she cant talk during an episode, we know what her sounds mean. But the really nasty stuff is the tics, self harm and aggression. So she will blurt swear words out much like in Tourettes Syndrome. But unlike Toutettes, these particular insults are deliberately aimed at me and intentionally hurtful. The one goal is to upset and offend. If her words don't get the desired affect of hurting me enough, she will pinch me or kick me. And of course if I'm not around or in her line of fire, then George is fair game.
NKH in full swing is like aggressive Dementia, Parkinson and Hungtingtons all rolled into one and for kids. If ever a disease sucked shit, this is it.
By Friday morning I was at my wits end. Things have slowly unraveled since that damn accident I discussed in the post Lockdown Series. Intimate Injuries but I can't work out why. In despair I called Alices Specialist at Perth Children's Hospital and e mailed him videos of Alices attacks of Chorea, the tics and the aggressive outbursts. He immediately agreed we had a big problem on our hands and between us we decided that despite her talk of earache, a UTI was still most likely in light of her injury 3 weeks ago and because of the neurological distress it was causing. UTI, for those not "in the know" is a Urinary Tract Infection. Parents of kids with multiple medical issues deal with them so often that "UTI" becomes part of our Urban Dictionary. Anyway, wee was collected and promptly raced to our local hospital and all the while I'm playing around with her daily meds to try and battle the storm in her brain for us to all stay sane long enough to find the problem.
While all this is happening, the sale completed on our house and we had two days while Alice was with a carer so we could vacate our old house and relocated our lives to a house about a third the size of our current one.
It was three days of complete and utter chaos. Lots of shouting and frayed tempers. Lots of take out food and coffee, lots of injuries to fingers and toes, lots of bumped heads and lower back injuries. One emergency visit to a physio to get my back taped up to finish the move, Greg drilled through his finger, I lost count of how many things I stood on that hurt, we manged to leave behind an entire kitchen drawer of saucepans and one TV remote either never made it here or is yet to be found.
And as if all of that wasnt enough, on our first night here we established that not only does the roof have absolutely no insulation in it whatsoever but a large community of what must be genetically modified rats live in our attic.
Let the good times roll.
In the world of COVID, I will go back to real stats next week but as of today, Australia is kicking ass, Europe and America are having a very shit time of it and Trump is telling his minions to riot and carry on like normal despite 40,000 having died so far. Right now I couldn't think of anywhere in the world Id rather be than Australia, even if i am in a rat infested, dilapidated beach shack with an 8 year old psychopath. Updated picks of the renovations will be in next weeks post.