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2020. End of a crazy year update.



I'm gonna really piss a lot of people off here but all in all its been a bloody awesome year. In fact if we are talking terms of Alice and how her struggles affect us as a family unit, Id say it was by far our best year to date.

We started off with the sale of our lovely, clean, tidy and well equipt home and moved to a rat infested shit hole with a daft vision of building a forever home on a plot large enough to ensure Alice can live on site but independently as an adult. Assuming of course that breakthroughs in gene therapy don't miraculously come to the rescue in the intervening years, in which case she'll no doubt be off being a rock star, secret agent, world leader or maybe just pregnant at 16 with a raging drug habit. Either way the plan is that she will have a granny flat at the end of the garden if she wants it.

Initially it sounded like a ridiculous idea and the list of things that could go wrong (and many did) were endless but in a complete reversal of fate, everything has, so far, worked out just fine.

The tiny cramped living conditions are not as bad as we'd imagined, if anything its brought us all closer (figuratively and literally). The lack of disability adaptations and equipment like door ramps, toilet bars, specialized feeding chairs and so on has ment Alice has had to adapt and is now managing steps, getting herself on and off the loo unaided and eating at a standard dining table. The absence of a dish washer, means George is now an expert at washing dishes and even Alice excitedly dries up anything plastic and unbreakable. Whilst the old house was opposite the beach, there was a long path to the sand and a sharp incline down through the sand dunes, neither of which Alice could navigate on foot nor could you take a wheelchair. The Shit Shack that we now reside in is even closer to the beach (about 150m) and its all flat terrain to get to the water, so the four of us walking to the beach is now a "thing".

Then of course there is the elephant in the room. "Surely COVID shat in your kettle this year"? I hear you say. A good question, when you consider that COVID shat in almost everyone's kettle, so why on earth would we not be affected? Personally I have no idea how we got so lucky but for once in the last decade, the person writing the Soap Opera for my life decided to change the direction of the script and deviate from its usual plot line. In fact Australia has pretty much avoided COVID completely. Sure, we have the ability to isolate as an island and shut state borders but remember we are as big as the whole of Europe and rely heavily on tourism, both nationally and internationally, so it hasn't been easy on the country or its people but it was a success due to politicians getting it right for once and the vast majority of Australians doing their bit for the greater good. Turns out lockdowns do work if you actually stick to the rules.

We did have to endure a lockdown in The Shit Shack back in March/April but it was still warm and sunny, we still had beautiful deserted beaches to play on a wide open spaces to walk in. But best thing to come from the whole COVID debacle, was that no one got sick this year. Because of social distancing, Greg working from home, hand washing, no therapies and all hospital appointments being conducted either by Zoom or on the phone, the whole family was healthy right through the winter. This was a first for Alice who has experienced a few big illnesses every year consistently since birth and it is one of the biggest pain in the ass parts of NKH for us.

For all that, the living conditions are far from perfect. They are barely tolerable some days but so far so good. Of course Id love not to have us all fighting over one toilet that is quite literally spitting distance from the shower. Alice can hold my hand when she's in the shower and I'm on the loo, and she frequently does. Yes I desperately miss a bath, a cooker, heating, air con, the swimming pool, storage, windows that don't leak, fly screens without holes in and any sort of privacy. No I don't like the fact that if a child runs through the house everything falls off the walls and if we use a hairdryer and a toaster at the same time the electrics blow. In the winter everything was damp and we were constantly cold but at just a few weeks into summer its apparent that this part of the year may actually be worse. Right now Im just clinging to that fact that we have lasted 9 months and we are all still seeing the funny side of it, so this suggests we might just see this through, still be married and the kids won't apply for voluntary adoption before our dream is realised.

Speaking of which, the build of the new house is finally underway. Ill write more about that when things really get going in the New Year, but we at least have the foundations down, sewage and electrics in place and the walls should go up in January.

Of course the other amazing thing to happen in a globally shite year, was the removal of Alices feeding tube. If you haven't followed the story its all explained in the series of blog posts I wrote called Requiem to a Feeding Tube. For those that are up to speed, here is what has happened since:

I think it was about 3 months ago now that we took her tube out. As the parent of a "tubie" you are advised by medical staff that these things simply close on their own, much like a piercing. You simply, remove the device, pop a band aid over it for a day or two and Bobs your Uncle, its all closed up and you get on with your lives. However, if you speak to any parent who's actually done this they will all tell you these things don't simply close on their own and the hole left behind will spew stomach acid and vomitus gloop for quite some time. Turns out parents know more than medical staff.


Any medical procedure with Alice is a mammoth task and fraught with anxiety, extreme behaviors and PTSD from all her years of medical interventions, but in the last twelve months her understanding has improved vastly. She's now aware that some things are for her benefit and that not all medical staff want to kill her, so despite the whole episode of having her stoma surgically closed was pretty awful by any normal standard, I have to take from it how things have improved from previous surgeries and hospital stays.

For example, this time she knew what she was going there for and why. Better still she took this information on board and expressed that she needed me with her and Daddy to hold her hand. She allowed a nurse to weigh her and measure her height. Alice waited a full count of 20 with a finger clip pulse and oxygen devise on her hand before she pulled it off and the same with a blood pressure arm band. Neither of these things we have even been able to get near her before. She let me take her temperature rather than the nurse and used her words to calmly say "No thank you. Mummy do it". Alice happily agreed to wear hospital issue pajamas and best of all swallowed two full syringes of the most god awful pre meds. The poor girl was in tears at how gross they were, but she did it with a pep talk from Dad.

On the down side, as her anxiety grew so did her swearing tics. Myself and Greg were constantly told where we could stick ourselves and any staff who so much as made eye contact got a mouthful of Alices finest words. As the pre med kicked in she lurched between stoned hippy and aggressive drunk. We had to have padding brought in for the bed bars and we ended up with Greg on the bed with her simply to keep her safe and prevent self harm.

The surgery went well but took twice as long as expected. I have no idea why but I do know my mind did its usual trick of taunting me with all sorts of horrific reasons as to why she wasn't back from theatre yet. You'd think after a decade of this it would be second nature, that I could just get a coffee or me and Greg could have a bit of lunch and draw straws about who gets to drive home and who gets to sit in the back with Alice and be sworn at. But for some reason every single one is like the first. We drink coffee, we feel sick, we worry.

The recovery was as brutal as always for Alice. No ripped out IVs or flying kicks to nurses faces this time but there was an incredible display of swearing in some interesting new combinations, a fair few attempts to punch and headbutt those trying to care for her and a lot of crying and screaming.

Thankfully we never have to explain to anyone why we should be released early and why we can better deal with Alice at home because its so blatantly apparent what a travelling Shit Show the Underwoods are. So just like always we are granted parole at the earliest opportunity and we wheel a half sleeping, potty mouthed, psycho child past all the "normal" families who are there for probably their one and only experience of a minor surgery with their complaint child. If you've ever been that family, please dont judge freaks like us. For many families we do this shit on the regular. and whilst we smile and laugh as we say our goodbyes, we are dying inside.

Alice slept on and off all afternoon, through the night and most of the next day. Today is day three and shes still extremely sleepy but no complaints of pain, no attempts to rip off dressing or pull stitches. On the whole, just like most things this year, it was a big win for us.


Another surprising thing to come out of the weirdest year in history is that I appear to of started a business by accident and better still it actually makes me some money. For those who don't know, I finally quit drinking last October. I've had a few wobbles but essentially I've been on the wagon for over a year now and as such I found myself looking for something to keep me occupied in the evenings. First I started with making dolls (I know, I know) and it turns out I am rather good at it. Within a few months I was selling them out of a local shop and on Facebook and my new hobby was at least paying for itself. Then as Christmas approached, I whipped up a few Gnomes, simply to see if they'd sell in the same shop that was selling my dolls. Well it turns out there a big market in Gnomes, who'd of thought it? Not only can I make anywhere between 10 to 15 gnomes in the time it takes me to make one doll but because they are cheaper the demand is much higher. A lot higher in fact. Within 3 months I am supplying to three shops, selling on Facebook and I have two other shops who I want to pitch too if I can just find enough time to build up some stock. So just when I thought 2020 couldn't get any stranger, I found myself self employed as a gnome maker (I wonder if there is an actual name for that profession?) and Gnome From Home was born.


I'm aware there is little mention of George in this post, but he's 11 now, his parents are little more than an inconvenience and he spends any spare moment he can either glued to his I pad or on his Nintendo Switch. Of course we pry him off at regular intervals, but rather than the endless stream of Minecraft/Fortnite bollocks that we used to spew from him constantly, its now silence or statements like "Im bored" or "Can I stay up late tonight" or his all time favourite of "Whaaaaat"?

He did however fall face first into a flower bed while trying to be a cool pre teen and walk sulkily along a low wall the other day. I laughed so hard that I nearly leaked some wee and he was so mortified that he banged his head on the car door as he dived for cover and anonymity in the van.

Maybe it because his feet are now growing faster than he is and as a result he's about as agile as Ronald McDonald.


So that's it in a nutshell. Not a great year globally but not entirely shite for Team Underwood. And that my friends is "win" in my books.

I hope you all have a wonderful Christmas and that 2021 at the very least talks softly in your ear and uses some lube before it shows us what it has in store.








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