Evelyn spent the weekend in hospital with another virus. She’s getting better now, thankfully, but it threw a large spanner in the middle of my Oh God We’ve Only Got A Few Days Until Our Shop Opens panic. There’s nothing like a toddler with breathing difficulties to make you throw all your to-do lists out the window.

She’s recovering now, thankfully. Hopefully she can avoid more viruses and more hospital stays for a while.

The business launches on Friday and we are, of course, chaotically busy. There’s soap to photograph, packaging to do, labels to print and cut and an entire shop website to fill with products. It’s a lot of fun.

Packing Soap

Lemon Blush

Cucumber Melon

I’ve got a lot of soap to pack.

In the middle of all this, Amy turned EIGHT.

I’m not quite sure where all the years have gone, but there you go. She’s eight and amazing. If I was a proper sort of mummyblogger, I would have written an entire post dedicated to my first born, complete with pictures. Instead I’m just kind of lazy about it. And busy.

Needless to say, she had a great day.

EIGHT YEARS OLD.

Someone hold me.

{ 7 comments }

Recently I saw a callout for writers to come forward and express interest in doing some sponsored work on a variety of topics. One of those topics was disability, so I put my hand up.

Skimming through the comments briefly, I saw a number of support workers put their hands up to talk about disability as well and I immediately got shitty.

The thing is, unless you have a disability, or possibly are the parent of a severely disabled kid, you need to shut up. You aren’t the minority group being spoken about. Your job is merely to shut up and listen.

In the wake of the Federal changes to how the disability pension was going to be funded for young people, it seemed everyone had an opinion and they were willing to shout it from the rooftops.

Social workers came forward. Disability support workers. Centrelink workers. That nosy old gossip at the post office. EVERYONE had an opinion.

“I work with these people and really, this makes it so much harder for them.”

“I see these people every day and blah blech blah.”

“There are thousands of these people routing the system and it needs to stop!”

These people.

These people.

I am one of these people and it offends me when people who don’t know what disability is like decide to speak on my behalf. I have a voice and I can use it for myself, thanks.

It took a long time to come to terms with my disability. The knowledge that slowly my body will start to fail me more and more often is a bitter pill to swallow some days, but I’m one of the lucky ones – I get to put things in place now in order to make my life in five years easier. I have a degenerative condition, I know about it, and I have accepted that.

I am also the parent of disabled children. I know how hard it is sometimes to step back and let my children speak for themselves – but I am also living in a body very similar to theirs, so I can advocate from the first person perspective of knowing exactly what helps and what doesn’t. And when their experience is different to mine, I shut up and listen to them.

It’s the same across the board. We need to let people advocate for themselves and stop trying to shout over the top of them because for whatever reason, we believe we know better.

Here’s the thing: I am disabled. Not stupid. My joints don’t work, but my brain does.

Disability is a complex and nuanced thing. There are as many different experiences as there are diagnoses and so it’s important that we listen to the people who know what they’re talking about. As much as that social worker believes she understands how disabled people live, work, and think, unless she also has a disability, she can’t explain from anything except a second hand perspective. And as long as I can talk, I firmly FIRMLY believe that I get to talk for myself.

Activism is hard work and it often leaves me curled up in an exhausted ball resembling nothing so much as a soggy cardboard box. But eventually I have to stand up and point out that I am disabled and you don’t get to speak for me unless you are disabled too.

We have strong amazing voices in our disabled community. It’s important that everyone else shuts up and lets the people who know what they’re on about speak.

 

{ 4 comments }

Soap, Spring and Sunshine

by Veronica on August 19, 2014

in Evelyn,Life,Soapmaking

A month on Cymbalta (give or take a few days) (take, mostly) and things are slowly evening out. My pain is back under control, I’m no longer feeling quite so scatty and distractable and if my jaw is dislocating a hundred times overnight, well at least it isn’t aching all day as well.

Spring is sprunging here. My fruit trees are trying desperately to squeeze out some early blossoms and the sight of the swelling buds brings me so much joy. The nights are icy and there is frost on the ground in the morning, but the days are long and sunny and there is a patch of sunlight in my bedroom I can spend hours lying in like a contented cat if I need to.

It makes the bitterness of death a slightly easier pill to swallow. Nathan’s grandmother died last week and he will miss her. She was lovely and we named Evelyn for her and my grandmothers together, which soothes the ache of missing them a little. Their names will live on, even as they don’t.

Yesterday was full of sunshine. Nathan spent the day grumbling about the dirt against the side of the house as he pulled weeds and discovered exactly where the wood boring grubs are causing issues. He excavated an old hole into the foundations of the house and we shoved the cats down there to hunt mice and chase each other.

Evelyn happily followed him around the yard, throwing weeds into the wheelbarrow until she got bored, pulled her gumboots off, sat in a pile of freshly turned dirt and began digging. By the time we were ready to come inside she was covered in mud, but it was okay, because she had successfully completed her quest to fill her boots up to the very top with dirt. I admire her ability to stick to a task as the cats ran over her, the dog nearly sat on her and the dirt she was sitting on got progressively damper.

A long warm bath and she was clean again, with a bonus lot of fingernail cutting thrown in.

Winter hasn’t been cold exactly, but it’s been dull and weird, probably contributing to my dull and weird mood. More vitamin D is in the works, along with an iron supplement, because I always seem to forget I need to supplement with iron when I get too exhausted to eat well.

The soap business launches in a little over three weeks and I am so excited. My shelves are full of soap ready to sell, and my other shelves (and the other shelves, and basically the entire house) is covered in soap still curing, packaging, label tests and various lists of things I need to do.

It’s excellent and exciting and I am so grateful to you, my dearest Internets, for supporting me and making the process of setting up a business so much fun.

2014-07-31 20.49.36 020

{ Comments on this entry are closed }

There’s always an upside.

by Veronica on August 4, 2014

in Life

I started Cymbalta twelve days ago. I think. Let me count. Yes, twelve days ago. Which of course means my brain has gone on holiday. I think I spent 2 hours yesterday sitting in front of the fire doing nothing. My brain just turned off and there I was, staring at the flames and nothing was working. I find myself gazing into space, thinking about nothing.

Everything is an effort. Like moving through treacle. But if I take them right before bed, I can’t sleep. WOE IS ME.

I need something to pull me out of this god forsaken grey fogginess, but I suspect the only thing which will work is time.

On the upside, my pain levels are a lot lower and I know from last time I should start to feel better in another month. I can do that. I can do this.

In the meantime, I spend a lot of time contemplating things. Do I need a wheelchair? Would I actually leave my house more often if I didn’t have to walk when we got whereever we were going? How does a husband push a wheelchair and a trolley at the same time? Could we convoy our way through the supermarket?

No.

So there’s that.

Things are happening here – well I mean, things are always happening here. And I think about writing about them, but then it’s like someone is sitting on my shoulder asking why the fuck anyone would care about it. Basically my brain is screwy and I’ve forgotten how to blog well.

The dog needs an operation. She limps intermittantly and a vet visit today showed her patella is dislocating. Because OF COURSE, right? If anyone gets a dog with a dislocating knee it ought to be me. So she’s off for an operation next week and I am so relieved. I was worried it was something more serious and we were going to have to put her down. Plus, the quoted operation was way less than I was expecting, so that’s nice. I’m not going to have to sell a kidney.

School continues, as always. Multiple complaints about multiple things there, but this blog is very public and I’m already persona non grata down there I suspect. Maybe I’ll write about it elsewhere and at least get paid to have sour looks thrown my way. How dare I complain.

Eve is recovering, slowly. She’s asleep at the moment, which is of course why I can write this rambling crappy blog post, because she hasn’t heard my fingers tapping and come running to sit on me and bash the keyboard herself. She’s still coughing, but that’s a hallmark of RSV, a lingering cough.

We moved her out of her cot (side note: if you’re in Tassie and you know someone who wants a cot, email me. good quality, aus standard approved and taking up too much space in my storage area. free as well.) and into a bed – well, a mattress on the floor because she flails a little too much to be trusted with edges yet. When she’s adjusted to this, we’ll play juggle the bedrooms and she’ll move in with her sister and everything will be chaos for a week. Of course.

So that’s me. Soap is happening, the business launch is a mere six weeks away and I’ll be glad when my brain is working well enough to actually let me work without losing my train of thought or accidentally falling asleep on my keyboard.

Yay me, right?

Again. Upside: less pain.

There’s always an upside.

{ Comments on this entry are closed }

And now you are TWO!

by Veronica on July 28, 2014

in Evelyn

My dandelion headed, willful, gorgeous, cheeky, amazing girl is TWO.

Eve opening presents 002

Eve opening presents 006

We’ve come a long way in the last two years and to hear her sitting next to me right now with textas and paper, demanding I draw her flowers is just fantastic.

She’s still recovering from the RSV and is more fatigued than normal, but she’s getting there.

Happy Birthday Evelyn! We are so glad we have you.

{ Comments on this entry are closed }