Evelyn

In summary: No one died.

by Veronica on July 19, 2014

in Evelyn,Headfuck,Soapmaking

Internet, I cannot tell you how nice it is to be home. I’ve spent the last three days in hospital with Evelyn after she caught RSV and gastro together, making her horribly unwell.

Evelyn sick

Three days of IV fluids and a little oxygen and we were allowed to come home yesterday for a trial to see how she does. I am grateful to say she rocked the trial and we are still home and she’s feeling a little better back in her own routine. Not well enough to run around the house, but well enough to have opinions about putting on pants this morning.

We were worried and we’re so glad she’s on the mend now. It will take her a while to gain back the strength and weight she lost, but she’s eating a little and toddlers are excellent at bouncing back. Unlike Nathan and I, who are still getting over the effects of the gastro and RSV Evelyn gifted to us.

On the being home front, there’s nothing like sitting next to a toddler who is too unwell to do anything but sleep, watching her oxygen drop lower and lower to make you appreciate small things like a hot cup of tea and being able to potter around the house without worrying someone is going to cough themselves into unconsciousness.

Not to mention the bliss of sleeping in my own bed last night after the hospital pull out and previously, a mattress on the floor so I could monitor Eve’s breathing.

Things have been quiet here while I tease out what I’m doing. Evelyn update above aside, I’m not a Mummyblogger any more. So I don’t know what I am. Tired, mostly.

The fortnight of serious illness coupling as it did with the school holidays means I am seriously behind on soap work. There is 24kg of soap needing to be stamped and honestly, I’m not sure I’ve caught it in time. It might be too hard to stamp and I’m loathe to ruin any soaps trying. So I may just ignore it and send them out unstamped.

My routine is thrown out, and I’m struggling a bit, stepping back into the role of maker, writer, business owner, mother, nursemaid. Taking a fortnight was the only choice I had, but it’s hard now, playing catch up. That’s the problem with working for yourself – if you’re too sick to work, the work just waits for you. No one else does it for you.

It will be okay. I’ve only got eleventy hundred soap buckets to scrape out and wash, and like, five hundred soaps to label and wrap. When I get around to buying the paper for labels. And designing the labels. And printing them.

Holy mother of god but I need three more of me. And minions. Lots of minions.

 

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So my Money Circle article this week is about Health Insurance and why we don’t have it. I wanted to expand a bit on this for you here. Which may end up less “expanded” and more “whingey” but what’s the use of a blog if you can’t complain about disability now and then?

Go read it and come back, okay?

I’ll wait.

Stop reading here.

You’re really bad at following directions aren’t you?

Here’s another link. Click it.

All up to date? Awesome.

Last week, Amy had an appointment with an Occupational Therapist at St Giles – the public health system’s answer to quirky and disabled children needing therapy. They’re awesome in there and we’re big fans.

Eve’s physiotherapist had referred Amy through after listening to us talk about some of the problems Amy was having at school. I wasn’t sure what to expect to be honest, certainly not answers immediately. After all, who gets answers straight away? That sounds like a normal person thing to happen.

Amy is struggling with writing at school because her hand isn’t strong enough to hold a pencil for more than a few minutes at a time. Her hand fatigues quickly, collapses a bit, and then fatigue travels through the rest of her body until she is barely managing to complete any handwritten work at all.

She’s smart, but memory only works so far when you’re too tired to complete your worksheets and journal writing.

Recommendations have been made for the school to follow through on. Things like a slope desk, weighted pencils and a Department of Education supplied notebook computer. Amy will learn better if she’s typing out her answers and her news writing, rather than spending that time hurting herself trying to write with a pencil.

These things are yet to be implemented, but I’m not sure it would be happening if we had private health insurance. Leaving aside the nightmare that is pre-existing conditions, most health insurers only offer a small amount of OT support a year. On the fund which seemed most likely to be affordable if I find and keep some regular freelance gigs, I was able to access $300 OT a year for two people, capped at $600. Now I might be misreading how therapy is covered, but it seemed to me like a lot of therapies we access aren’t considered very necessary to health insurers.

Sure, if we break a leg, it would be awesome. But for long term degenerative disabilities, which need supportive care, plus extra medical care? It’s not feasible.

Amy is going to start OT at the end of the month, going once a week for a month when we’ll reassess how much help she needs.

Evelyn sees a physiotherapist, a dietician, a paediatrician, a GP, a neurologist, an ophthalmologist and an audiologist. Some of these things are covered and some are not.

Disability is a hard thing. Not only does it impact every part of your life, but often it impacts your ability to earn money. Once your earning ability diminishes, your quality of life does too, because where is the money coming from? Basics are covered, but other things, things that make life easier like stair lifts and hand rails and dietary needs, those are the things you have to decide whether you really need them.

Evelyn is developing a range of allergies and intolerances and we’re basically on a Paleo diet right now, except without nightshades or strawberries, and with rice.

Gluten makes her sick (we’re going to be checking if it’s just wheat, or gluten as a whole, as soon as we can), dairy makes her vomit. Nightshades give her hives, so do strawberries. We’re down to only fresh produce, and expensive ingredients.

I’m not sure about you, but fresh food is awesome. It’s also expensive, doesn’t last as long as pantry staples and takes more preparation than a bowl of two minute noodles. When I have to plan every single meal to make sure Eve is getting enough nutrients from her food, rather than just handing her crackers and cheese at snack time, I start to get exhausted and broke.

There’s only so much apple sauce a toddler will eat before she’s bored and screaming.

Because apples are cheap and artisan coconut flour and almond meal to make toddler friendly paleo blueberry muffins are not.

Disability is a multi-faceted thing. I think people like to imagine disability in terms of wheelchairs. Without a wheelchair, you’re just putting it on. No matter that wheelchairs are probably in our future. When you think of disability and working, no one takes into account things like pain, exhaustion, joint fatigue, muscle spasms, dislocations, blood pressure issues, heart palpitations, fainting, vomiting, nausea, etc etc. You get the idea.

My form of disability means I cannot work in a regular job, even if I was in a wheelchair, because I need to spend so much time in a prone position between bouts of doing things like preparing a paleo lunch no one will eat.

Without a regular job, there isn’t regular income and no way to pay for the health insurance that people assume I should have, because as a disabled woman who gave birth to disabled children, I ought to be ashamed of using the public system, can’t I see what a drain, a strain we are on the system?

Like I said, complex.

We’re lucky, we have options open to us. We’re in the process of opening a soap making business. Our future, financially, looks brighter than it had been.

But other people are not in the same boat, and that’s rough.

Health insurance is complicated. Disability is complicated.

And that’s the real story.

 

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YOU GUYS. The upworthy headlines drive me crazy. So crazy of course I had to use one, because IRONY. Or something.

(This isn’t ironic, it’s just annoying.)

Yesterday was supermarket day and Coles had strawberries on special. When we got home, I shared the strawberries with Evelyn and YOU’LL NEVER BELIEVE WHAT HAPPENED NEXT.

Oh wait, yes you will. Because of course she’s allergic to strawberries suddenly.

041

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I put her to bed shortly after these photos. 45 minutes later she was awake, screaming, with a sore tummy and a even splotchier face. No breathing problems or swelling though, so thank god for small mercies.

After panadol, cuddles and lots of love, she let me put some soothing cream on the angriest of the red bits.

Strawberry allergy. Grumble grumble grumble.

She had a bad night and today seems like her tummy is still causing a bit of pain, but the redness has eased, leaving behind a big eczema flare up.

On the upside, strawberries are much easier to avoid than peanuts or eggs.

And she’ll probably grow out of it.

And it’s not that big a deal in the scheme of things.

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Take your eyes off her for a moment.

by Veronica on February 28, 2014

in Evelyn

Look at me!

Hi Mummy

Evelyn looking cheeky

What, I'm not meant to be up here?

19 months old.

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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.

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