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.


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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We saw Evelyn’s paediatrician yesterday.

Digression: How many of my blog posts in the last twelve months have begun like that, I wonder? It seems like it’s all I ever begin with. We saw “insert medical professional here” yesterday and BLAH BLAH your baby is WEIRD. Is it just me? Am I the only one boring myself to tears?

Sorry. Back on track.

We saw Evelyn’s paediatrician yesterday, who immediately let us know that Evelyn’s last lot of bloods showed her to be severely anaemic. Her haemocrit levels were a 3, when they should be at a minimum of 30, and her ferritin levels were a 2, when they should be 100.

Iron supplements have been started and thank all that is holy (seriously, rub your Buddha, praise your God, pet your kitten, whatever floats your boat) she is managing to swallow her meds. Sure, it takes me more than five minutes to give 3ml of iron, a drop at a time, but it’s going in and it isn’t being spat or choked on. WINNING.

Of course, her serious anaemia leads into some serious concerns about the fact that the baby isn’t eating anything except breastmilk and the occasional accidental pea.) Thus far, I’m managing to meet her calorie needs, as exhibited by her lovely chubby cheeks and no weight loss, but I’m not managing to meet her nutritional needs any more – not without some form of supplementation happening. And yes, before you ask, I’ve added an iron supplement to my diet as well, just so that we can cover all bases. Because, EXHAUSTION.

Evie has been referred through to the Hospital Dietician, she is being booked in for a Barium Swallow to check for structural issues, and we’ll start the baby steps to get her coordinating her swallow effectively and hopefully transitioning back to solid food again.

“You need to realise though, this process is going to take months, at least. It won’t happen overnight.” says our Paed, as I rock and laugh maniacally in the corner. How do you supplement a baby who won’t take a bottle or cup? HAHAHAHAAA.

They can work that one out for me.

In any case, Evelyn is under the care of a fantastic team, both at St Giles and The Royal Hobart Hospital. I cannot speak highly enough of their care and commitment to Evelyn’s health.

She’s also been referred through to our geneticist, so that he can look at the probability of Ehlers Danlos (dislocating joints AHOY), or whether there is more testing that needs doing, to look for other conditions as well.

In the meantime, we have a sleep deprived EEG booked for next week. I have to wake Evelyn up at 4am to make sure that she is nice and exhausted and angry and OPINIONATED for the EEG sensors, before hopefully falling asleep and exhibiting her constant sleep-twitching. I’m not looking forward to that one. Actually, I’m not looking forward to anything much at all. The thought of trying to get Evie to do anything she doesn’t want to do fills me with a special kind of dread.

Upside: It’s her birthday on Sunday. I have successfully kept this complicated baby alive for almost an entire year now. CELEBRATIONS. CHOCOLATE. CAKE.

I think I’m winning.

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When your baby’s knees dislocate

by Veronica on July 11, 2013

in Evelyn, Seizures

I’ve been telling our medical teams for months that Evelyn’s knees are clicky.

“It’s just her low muscle tone. As she grows, it will improve” they all said. “Nothing to worry about.”

Until I was sitting at a physio appointment with Evelyn, talking about her knees when Evelyn began to click her knee in and out of joint.

“Hang on, is that the clickiness you’re talking about?” asked our lovely physiotherapist, while turning a little green. “That’s not normal. That’s not right. I’ve never seen anything like that before, ever. You need to get a referral to an Orthopaedic Surgeon for that.”

Oh. Right. Because dislocating knees in an 11 month old isn’t a good thing.

She’s learned to pull to standing, but her ankles are rolling in. We’re giving her another 6 weeks to encourage her muscle strength before she’ll have to start wearing support boots full time to keep her feet where they should be. Her hips seem fine, but because of the laxity of her knees, her feet end up turned backwards.

It’s a fine line, between wait and see, and actively intervene. We need to give her muscles a chance to strengthen, but we also need to be prepared for what happens if they don’t.

Evelyn choked yesterday, sitting at my feet. She’d been chewing on a rice cracker and I immediately assumed that something had gone down the wrong way. I held her while she spluttered, coughed and then stopped breathing entirely, her little eyes full of panic. I smacked her on the back, thanking everything for first aid training, and held her over my knees while she began to cough and breath again, finally vomiting in my lap.

Only, the thing is, there wasn’t anything large enough in her vomit to have caused a choking episode like that. She’s choked before on her own saliva and I can only pray that it isn’t getting worse. She’s stopped swallowing most foods, and I’m awaiting an appointment with a speech pathologist to discuss the choking/swallowing issues. We also see our Paediatrician soon, where we’ll discuss everything, before another EEG occurs later in the month.

It feels like we’re just running to play catch up right now. Her knees are dislocating, she tried to choke herself and she’s still having seizures overnight.

On the bright side, she can clap hands, wave bye bye and she woke me up this morning by very carefully biting me on the nose. Twice.

And she’s adorable.

Evelyn 11 months


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Two days ago I sat down on my computer chair and leaned backwards, sinking further than normal. Thinking that it felt odd, I got off the chair and looked to see if for some reason, it was bent, or crooked, or somehow or other, new. Not noticing anything, I sat back down, leaned back and suddenly found myself laying flat on my back, legs akimbo, looking at the ceiling.

You know there is something wrong with your chair when your vertical self suddenly becomes horizontal when you least expect it.

Obviously I am okay, except that Amy laughed at me and then wasn’t much help when I had to contort myself into strange positions to get out of my predicament. Now I’ve had to steal my husband’s chair and it feels all wrong. It doesn’t tilt quite the way I like it and I’m left bundled up in the centre of the thing, trying to work out how to type quickly and easily, while also not getting stuck like a large spider in a too small space.

All of this is very First World Problems, which I know and understand, but I’m distracting myself from the week that was, and thus, you get to hear about my computer chair.

Plop. There I was, flat on my back, like I’d had a rug pulled out from under me.

Thursday, in the moments after my grandmother’s funeral, we hurried ourselves off to a Paeds appointment for Evelyn.

The short answer to “What happened, dear Veronica, tell us because we do love your baby so” is – we’re doing more testing.

Digression: Evelyn, when she was a vaguely preterm baby stuck in special care, bled beautifully, provided it was only a heelprick that we needed. Since then, she’s had plenty of cannulas and assorted other needle pokes and I am convinced that my baby does not actually want to part with her blood. And who can blame her really? Having needles poked into you is miserable enough without the blasted nurses then stealing the blood like vampires and taking them away. No. If I was Evelyn, I wouldn’t want to bleed either. But bleed she must and between you and me, Internet, I am dreading the next time we head into the hospital. End digression.

We’re now testing for neuromuscular diseases, because her tongue tremor is uncommon and concerning and Things Need To Be Ruled Out. Evelyn is also going to have another EEG, which is going to be Fantastic Fun when this child does not find things being placed on her head and stuck there with tape at all amusing. Also: Hair.

Needs must and all that, and in the middle of it all, I am stuck sitting on a computer chair that I Do Not Like and this is the end of the world.

Because when you’ve spent too much time reading about Neuromuscular Diseases, then obsessing over your chair just makes more sense than anything else.

Now excuse me. I have to go hug my baby.

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I am worried about this baby.

by Veronica on April 22, 2013

in Evelyn, Headfuck, Seizures

This morning, I put Evelyn down for her nap and when, five minutes later, she complained loudly about having to fall asleep, I picked her back up again. I tucked her under my chin and we paced the floor, snuggled together, while I listened to Neil Gaiman talk.

She snuffled my neck and wound her fingers into the tufts of hair behind my ears, tugging gently.

The talk finished and I put Evelyn down, patting her gently. She fell asleep and I was left looking at her. Baby soft cheeks and milky smell and I am so worried about her.

She has no depth perception, you see. She flinches when we walk in front of her, or we wave our arms, or something moves. She can’t judge where that thing she wants to grab is. Every new thing I notice is like a check mark against her; against the possibility of normality.

Last night, I rubbed her tummy while she fell asleep, feeling so lucky to have her. I watched her while she seized and seized and seized, thinking that if we end up having to go to hospital every time she seizes for longer than five minutes, I’m never going to spend any time at home.

Her tongue trembles, and she holds the tip of it arched up to the roof of her mouth. Her gross motor skills aren’t improving. She still has head lag when I pull her to sitting. Her shoulder joints slide around under my hands.

I worry about her, because no one know what is going on.

And yet – when I leave the room, she cries. She is amused by kisses. She watches her siblings avidly. She soaks everything in like a sponge. Her mouth moves in response when I talk to her. Cognitively, she seems very much like an almost nine month old baby, even if physically she can’t master anything she’s meant to be doing.

I like facts. I like to know what is going to happen. I like plans and progress and an idea in my head. I like these things because they give structure to my unbridled imagination that is always darker than my reality is likely to be. Because if someone says unequivocally “Your baby has X” then I know what X means and I can stop waking up at 3am, worried that she is dying.

This is what it means to be waiting and seeing. It means I pace the floor with my baby, listening to Neil Gaiman talk about throwing things to the wind like dandelion seeds, while I try to impress the smell of my child into my brain, just in case.

Because like he says, no one knows what will happen. No one knows where an idea will land.

And sometimes, that is the scariest thing of all.

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