Evelyn

Evelyn gets a tooth. Also, I’m not really here.

by Veronica on May 30, 2013

You guys. I woke up this morning feeling like I’d been hit by a truck. The plague that struck down my children has hit me and I have headaches and chills and cold feet and a serious need for someone to pet me on the head and bring me chicken soup. Instead, I’m writing blog posts and articles for The Shake and trying to work out how Evelyn took a chunk out of my nipple.

Except it’s not really a mystery. She got A TOOTH. I know. Big news. My baby is now all nippy and toothy and I can’t let her gum on my fingers anymore for fear of having her break the skin and turn into a tiny little vampire. Or something. I’m a little feverish and probably not making any sense. BUT A TOOTH.

My baby is growing up.

009

LOOK AT HOW BIG THEY ARE.

In other news: I have been writing at The Shake, A LOT. Here’s some of my articles you might have missed and that I think you will enjoy.

Women are expected to be attractive. “As far as feminism has come, it seems that women are still expected to try and be attractive to others. From being asked by a man to smile (why do I owe you any sort of facial expression?) to the implied expectation that we all wear makeup, shave our bodies and have hair that looks normal.”

Rape Culture and our penchant for Victim Blaming. “I am a sitting here as a woman, existing in a world of rape culture and every bit of news reporting serves to show me how very unsafe I am. I am uncomfortably aware of how, to a percentage of people, my ownership of my own body can be overruled by the desire for someone else to see me used.”

How to raise engaged children. “I was an engaged child, growing up in the nineties. Of course, by “engaged” I mean, constantly engaged in chores and household work and activity, a fact which I bitterly resented when aged ten, I found myself standing down the bush throwing rocks at a tree angrily rather than collecting sticks.”

Female viagra will lead to crazed binges of infidelity; societal splintering. “Lock up your wives and daughters. Female “viagra” is set to cause widespread infidelity of unparalleled proportions. All those tired lines about female nymphomaniacs preying on the poor poor men are going to play out. No one will be able to stop the rampaging vaginas in the street as women tear off their clothes screaming “take me, take me now!””

India declares dolphins to be “Non-Human Persons”. “Humans are arrogant, as a species. We’d like to think that we’ve got the jump on all other creatures; that our society is the most developed because we have science and technology. What if we’re wrong?”

Amongst other things. Wow. I have been writing a lot.

How are you?

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Evelyn is growing up.

by Veronica on May 23, 2013

in Evelyn

This morning I was awoken at 5.50am by Evelyn wanting a feed. Nothing unusual there of course – she still wakes often overnight. Her twitchy seizures startle her out of sleep and then she feeds for comfort. Once she’d finished her feed, I put her back down into her cot, hoping that she would at least sleep until our alarm went off at 7am.

No luck – she was awake and wanted to play. Again, nothing unusual. I keep a few toys in the bottom of her cot for mornings like this. If I turn on her light mobile, she can bash it and play while I catch a few minutes extra sleep.

I rolled over and all was well until ten minutes later, when Evelyn woke me up by bashing me on the face with her tiny cold hands. Turns out she’s worked out how to wiggle up the small ledge between her (three sided) cot and my bed, to make her way to my head.

She looked thrilled with herself, of course. Can you blame her? She can now wiggle herself to Mummy overnight whenever she wants. New skill mastered! Plus 10 experience points! Minus 4 sleep points.

Lucky she is adorable and does things like giving me a round of applause when I get her up after her nap, and waving bye bye at every opportunity. And she’s such an old pro at giving blood now that she didn’t even cry during her blood draws on Tuesday – leaving Nathan and I in a little bit of shock. We’d been dreading it and then nothing. She just sat there and played with the tourniquet end.

My baby is growing up.

Evelyn smiling

Clever girl resting on her elbows

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Moving forward in leaps and bounds

by Veronica on May 20, 2013

in Evelyn

This morning, as a kitten napped in front of the fire, Evelyn commando crawled over to her, grabbed her by the head and then shoved her in her mouth. When I rescued the kitten, Evelyn rolled over onto her back, looked at me and clapped her hands.

She’s very clever, this baby of mine.

Tomorrow she has bloods to check for markers of a neuromuscular disease. We will hold her flailing body down (again), while the nurses poke her with needles (again) and we try not to take the screaming too much to heart (again). Holding my baby through a blood draw is one of my least favourite things to do, beaten only narrowly by holding my baby during a lumbar puncture and sawing off my own feet without anaesthetic.

But as far as Evelyn goes, she’s doing really well. She tries to eat the kittens, tangles herself up in towels left on the floor, plays peekaboo and claps her hands.

What more could I ask for?

Last week:

She likes to eat her toast reclined sideways in her bouncer, head resting against the edge. She giggles when I kiss her tummy and is so very pleased to see her siblings, especially Amy when she gets home from school.

Eating toast 016

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I fell off my chair, but it’s OKAY, because I am OKAY. My baby however, well, hmmmm.

by Veronica on May 13, 2013

in Evelyn, Seizures

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.