Author: Veronica

  • Things I’ve been doing, because god knows I haven’t been writing.

    It feels like it’s been a busy few weeks. Evelyn is amazing at hearing the clickety clackety of my fingers on the keyboard and deciding she needs to be sitting on my lap immediately. She also loves to climb onto my desk and type herself, usually deleting any project I’ve got open at the time.

    Needless to say, I haven’t been on the computer much.

    And considering it’s just taken me 25 minutes to write 65 words, I’m not sure this is set to change any time soon.

    Gardening:

    I say gardening like I’ve been “doing it” but what I’ve really been doing is watering the gardens, picking the produce and thinking about the things I need to do for Autumn, rather than actually doing anything. The tomatoes and pumpkins are doing well, although it turns out I planted three tomatoes of the late fruiting variety and hahahahaha I’m an idiot. They’re only just finishing their flower now, which gives them a month, maybe, to turn into green tomatoes I can pick and hang.

    It’s unlikely to happen.

    Luckily the cherry tomatoes are doing well and the little gannnets I call my children are thrilled to be able to search and destroy red tomatoes. Nom nom nom.

    The pumpkins, well, I only planted one variety this year and I’m a bit annoyed at myself. They’ve done well, but not amazingly, and I think I prefer a smaller variety of pumpkin which produces a lot, rather than a larger variety which struggles to squeeze out two pumpkins per vine.

    The vines themselves have done well, growing along the ground to catch any stray chickens who might be looking for an easy meal, but the female flowers have started turning yellow and dropping off before they even get any bigger than a 5c coin.

    Which: Hmmmph.

    Parenting:

    Gah. Parenting. Who’d have thought having three children would make me so time poor?

    Well, actually this is a lie. When I’ve got time to read books, play in the garden, game and do other things for pleasure, I’m really not time poor. I just feel like I am because yesterday, Amy talked non-stop. NON-STOP. Not even an hour at the dentist did much to stop her discussing everything from planets to oceans to the latest mods on minecraft in obsessive detail.

    I had a headache by bedtime, but I was glad Amy was feeling better. She’s got an ear infection and I’m just grateful our doctor was able to squeeze her in so she could start antibiotics.

    Isaac has adjusted to kindergarten amazingly well. I’m surprised and pleased at how well he’s doing. He’s confident in the space and comes home telling me about all the fun things he’s done at school. I’m pretty impressed.

    Both kids had a great time at their athletics carnival. Isaac ran a fourth in the running race, and second, third, fifth in the novelties. So proud.

    Amy did brilliantly too, running in every single race for her class group, which was frankly a miracle for a child as bendy as she is, and brewing an ear infection to boot.

    Evelyn, she’s doing well. Not quite sleeping through the night yet, although now she’s back on pediasure rather than cows milk, she’s down to waking once, rather than five times. Turns out our dairy trial was a miserable failure, with Eve breaking out into eczema, getting constipated and otherwise being a miserable little git. Dairy doesn’t agree with her – although she seems fine with small amounts of yogurt and cheese. Something something enzymes partially digested proteins, something something.

    I am worried about her overall mobility however. Her left leg keeps collapsing under her, sending her hurlting towards the ground more than I care to count. She’s hypermobile, and so low tone. I’d hoped a lot of this would improve when she was running around, but no, and in fact she’s been a bit worse. The physio team wanted to see her at 2, so I think I’ll move that appointment up.

    She sees her Paediatrician this coming week, and while I’m sure he’s going to be glad to see how she’s grown and gained weight (HALLELUJAH FOR EATING), she’s not talking. Her receptive language is fantastic, but her functional speech is practically non-existent. At 19 months, she says Mum, Dad, Nan and HI! Occasionally if she’s in a good mood you can encourage her to copy words back at you, but mostly she silent except for various inflections of eh? eh! EH.

    I’m hoping speech will just appear magically, but we’ll see what her team thinks. For a toddler who understands pretty much everything we say, I feel she ought to be talking more.

    Soapmaking:

    New obsession.

    I asked Nathan last night to come and smell my newest batch of soap (who wants plain soap when you can add things? CHEMISTRY! YAY) and he looked at me plaintively.

    “I didn’t think you’d make this much soap so quickly.”

    But it’s like Christmas! Waiting to open a soap mould, waiting to see what the chemical reaction has done to the ingredients, it’s so exciting. AND, I’ve only made five batches in a week, so I’m not sure what he’s complaining about. Also, who wants to continue making the same boring base when you can add things to see what happens? Honey and oats for example. Or kaolin.

    I’m still very much a newbie at it all, but the science of soap is endlessly fascinating and I love how tweaking just one ingredient changes my whole soap makeup.

    Science! Is fun!

    So I’ve been making soap, and hopefully some of it is going to be amazing once it’s cured.

    Life:

    Is good.

  • Buying a renovators delight. It’s heaven and hell.

    Every day I am grateful we own this house. Mostly it’s because I know we won’t lose our safety deposit when the kids draw on the walls, or I kick something too hard and make a cupboard fall off it’s hinges.

    I’m not so sure Nathan feels the same way – not after he just spent a week stripping the years of caked on paint off the bathroom door so we didn’t have to look at an ice blue mess anymore.

    I’m writing more about what it’s like to buy a house in a total state of disrepair over at Money Circle today.

    And yes I know I’ve been sending you over there a lot, and I’m hoping to write more here soon too. One day. When Eve doesn’t keep stealing my keyboard, or shutting my computer down, or screaming at me because she’s getting her eye teeth.

    Save me.

    (As I was writing this she put a hat over her head so she couldn’t see and walked into the table. Now she’s sitting on me screaming because I won’t let her type.)

    Anyway, click over and read. I think you’ll like it.

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  • My supermarket bill is killing me.

    So, we’ve been broke this month. And not broke in a “we’re doing okay” kind of way, but broke in a “let’s not go anywhere because we don’t have the petrol”. A few things conspired against us and our savings – namely a large mechanic bill, impending car registration, bills, and just stuff. You know how it goes, I’m sure you’ve all been here.

    And then my bank changed the way it works, showing me just how much we’ve been spending at the supermarket. You guys, I’m not sure why it’s cheaper to buy crappy processed foods rather than ingredients, but it is, and we’re stuck with it.

    But it has to change, because I can’t keep this up.

    No worries though, I have a Plan.

    Read the rest at Money Circle.

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  • Fly-by offenders, disability thoughts, and everything going to hell in a handbasket

    In my barely checked gmail account the other day, I discovered someone had commented on a Youtube video of mine. It was vaguely offensive, and made me do a double take, before I removed the video.

    Backstory: When Evelyn was small and having regular myoclonic episodes, I videoed them and put them on Youtube so her medical teams across the country had access to them. Mostly they didn’t get any views, which was fine with me. Youtube was only ever a tool, nothing more.

    Many many EEGs and blood tests later, doctors determined they didn’t know what was going on, or what was causing the twitching. It was labelled benign because after a large plateau, Evelyn developed normally (mostly). Benign is good. We love benign.

    I watched the video of her twitching again, and felt sick. She still twitches regularly, often waking herself up overnight with the jerking. We don’t think it’s causing any damage, and we can’t do anything to prevent them, so mostly we ignore it. A serial Youtube commenter with a plethora of offensive comments to her name (all on videos of babies, most with disabilities of some kind) made me rethink keeping Eve’s videos up.

    I’m all for education, but what was I showcasing? Nothing anyone could explain. And the commenter was right, when you didn’t take into account the frequency and violence of Evelyn’s myoclonic episodes, they did just look like slightly pronounced baby movements.

    But hey, KARMA was totes gonna get me and by worrying about my baby, I was going to CAUSE things to go wrong with her. Because KARMA. Because how dare I call seizures, seizures? KARMA.

    Ugh.

    For the record, non-epileptic seizures are still considered seizures. Just, FYI. They’re not damaging, but they’re still seizures.

    I don’t know where I’m going with this, except I was surprised an ignorant comment from a fly-by youtuber annoyed me so much. Like she was doubting my experiences with my baby. Like I was making it up for attention and because she felt that way, I deserved worse things to happen to my baby.

    It’s strange, isn’t it? How we make snap judgements and wish for an almighty something to smite people we think deserve it. Like karma is some kind of godwarrior war hammer being flung around in response to people doing something we disagree with.

    In any case, Eve’s issues are not a result of karma, and my talking about them or not talking about them doesn’t change a thing. She still has the issues she has, and nothing anyone on the Internet says, or thinks about me will change that.

    I watched her knee dislocate earlier, as she ran across the house. One moment, running. The next, she was face planted in the carpet, looking like a stunned mullet. How did that happen? Suddenly BAM, floor.

    Genetics, man. You can’t fuck with the genetic lottery. Karma doesn’t smite you, and genetics can’t be changed with a wish for someone to get their just desserts.

    Evelyn has Ehlers Danlos Syndrome. She’s in good company, her siblings and I have EDS too.

    I’ve been thinking a lot about ability and disability lately, about how wheelchairs are seen as the only form of disability, and there is an implication of paralysis if you’re in a wheelchair. I walk across my paddock, a little wobbly, a lot braced, and wonder how many years I have left to do this. How long until a wheelchair for the supermarket is a necessity? How long until sitting down becomes easier than forcing one more step? How long until my disability is visible?

    And if you’re in a wheelchair, can you also push your daughter in a wheelchair?

    There have been multiple attacks on the disabled lately. It’s hard enough to be disabled you know, without someone also calling you benefit scrounging scum and implying you’re a drain on society. I’m not in a wheelchair yet, so how dare I call myself disabled? How dare I think about the disability path for my children, who can run and jump and land flat on their faces when their joints collapse.

    I can write on the Internet, so clearly I’m not disabled. I’m just poor, and too stupid to go out and get a proper job, when I could be contributing to society. (Kill me now)

    Disability is a multifaceted thing. My personal brand of broken involves lots of laying down. Dunno about you, but I haven’t heard of a 9-5 job that allows you to work from bed, prostitution notwithstanding and my joints aren’t stable enough for regular sex, let alone the acrobatic kind. I can do plenty of things, but leaving the house every day isn’t one of those things. It doesn’t matter much, I can’t do handstands or cartwheels any more and my life doesn’t seem to be any lesser for that.

    Contrary to popular belief, a lot of disabled people can’t work because the standard workforce isn’t equipped to deal with us. When your brand of disability is something which changes in severity every day, you can’t commit to a regular cycle. My last job failed because I kept having to run to the toilet to puke from exhaustion. This was 8 years ago.

    So I’m limited to writing, and arm-chair activism. Which is really from-bed activism, where I thank the godwarriors for my laptop, internet and karma.

    I haven’t spoken about EDS lately, because frankly it’s boring. I live with it, I don’t also want to have to write about it every day. I have to face it every time I take anti-nausea pills so I can function through the day, knowing damn well they’ll probably cause Parkinson’s down the track. But these are the choices you make, for yourself, for your children. You borrow against tomorrow so you can survive today.

    The karma hammer didn’t fall on me. Ehlers Danlos isn’t some cosmic punishment for something someone did in the past. It’s just something that is. Something we live with.

    And that’s okay.

    But please, stop making me feel like crap for things which are outside of my control. I didn’t choose to be broken, the same as I didn’t choose my hair colour, or my shoe size, or how well I can see.

    It’s the genetic lottery, and everyone gets dealt a different hand.

    The least you can do is accept it with grace.