19 months old.
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Evelyn
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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The hardest thing about my grandmother dying, if you ignore the loss of our matriarchal support system, is that I can see her in my children and she is not here to see herself in them.
Evelyn Kathleen was named after both Nathan’s grandmother (Evelyn) and my grandmothers (Lyn and Kathleen), and I can see them in her. Especially my grandmother Lyn.
Death is a multi-layered thing. There is grief and grieving, loss and missing. It changes, warps and moves, and sometimes I am still struck low by just how much I miss her.
Our Christmas was low key. Original plans fell out of the window when all three children fell sick just before the big day, so we cancelled and stayed home. It was a good decision, albeit a hard one to have to make. The children spent a lot of time doing nothing, and being unwell.
Evelyn’s eyes are finally settling on the colour they will be. A piercing blue green, I see my grandmother in them. Same colour, same curls. And maybe, you think I am looking extra hard, because she died too soon and missed this third great-grandchild of hers. Maybe you’re right.
But then I see photos of Nan as a baby, and I know I’m not wrong.
I miss her, a lot.
Christmas is hard when your family is missing giant parts of itself.
I asked Mum today if she would hunt up the photos of Nan as a baby and send them to me so I could share them.
We think the final photo is our Aunty Joan holding Nan. My grandmother, Kathleen is on the right in the second photo. Joan was her sister.
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When you’ve got a child who won’t eat, everyone is full of advice and admonitions that it’s all normal. Which it is, in 99% of cases. Toddlers are insane creatures who want to live on tina wafers and air, with the occasional cracker or chicken nugget thrown in.
But Evelyn’s issues aren’t like that.
After a huge amount of success with our new therapies, we were working on getting her to eat enough at each meal. Slowly, the amounts were increasing from one teaspoon through to 100g, through to 150g, four times a day. Sure, mealtimes required more planning, a certain amount of structure and we had things we did that worked – but she was eating. Albeit, only smooth purees, but who cares? Anything can be blended.
But a week ago, Evelyn had a pain reaction during swallowing. All our work making food a safe fun thing, and our high chair a safe place went out the window. Evelyn doesn’t trust food. All my promises of “this won’t hurt” doesn’t mean a thing when neither of us believe it.
We don’t know why sometimes swallowing hurts. If we knew, maybe we could fix it.
So. Evelyn hasn’t been eating anything. Our medical team know about it, and they’re as upset at the big refusals as I am. Or maybe not as much as I am, because they don’t live with her. But they know, and they’re working on a plan.
It’s hard to not worry about her, and harder still not to obsess over everything she puts in her mouth.
Spoon food makes her gag violently at the moment, and spit it out frantically.
It’s hard, and I don’t know where we go from here. Current advice is to not push food, not to make a big deal out of it, and hopefully she’ll cut out the spoon refusal within the next week or so.
Until then, she’s eaten half a mouthful of watermelon today, and chewed on a variety of things that she didn’t deign to swallow.
How dare we expect her to nourish herself.
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Because Evelyn doesn’t talk, we use a mix of gestures, badly mangled sign language and miscommunication.
This morning, we were working on body parts.
“Eve, where’s your tummy?”
She pulls up her tshirt and points.
“Where’s your feet?”
She lifts them up and wiggles them at me.
“Where are your hands?”
She waves them in my face.
“Where is your nose?”
Evelyn looks stricken. She turns around, looking around the room frantically.
Then, wide-eyed, she lifts her hands up and does our universal sign for “OH NO!” (Both hands placed on her head dramatically)
“Is your nose lost?” I ask.
She widens her eyes even further, and signs “OH NO!” again.
Evelyn has lost her nose. I suspect her Uncle David has it.
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