One of three most precious to me, and the centre of my biggest silence

More interesting than what people write about, sometimes, is what they don’t write about. All sorts of things can inhabit those silences.There have been whole months when I’ve written nothing, and there’s usually a reason for that. And when I do write, there are some things that I don’t mention.

The yawning silences in Box 761 have been largely constructed to obscure disability: my (step)daughter’s disability and how we all work together to accommodate it, and our reactions to a world that doesn’t always accommodate itself to her needs….

One reason I didn’t write about it was that it didn’t really feel like my story to tell — it’s hers, right? And I kind of wanted to make “Box 761” a place where that particular issue wasn’t always at the forefront – a place where my story lived.  So, when I started writing here I was just coming off a long period of working in the disability community, volunteering in the disability community, and mothering in the disability community of Box 761, and I wanted to write about all the other things that are me.

Disability has a way of taking over if you let it.

I  was also uneasy – worried about falling into a “mommy blog” pigeon-hole. Or into the even smaller, deeper “special needs mommy blog” hole. It was important I carve out a spot for myself, somehow.

I forgot, though, that mothering has become who I am, not only what I do. It’s not all of me of course, but it’s a big lovely rewarding frustrating boring challenging awe-inspiring part of what I do every day. It’s a privilege to do, especially since these gorgeous women who I mother aren’t my biological children, but are instead a gift given to me first by Mr. 761 and second by those amazing children themselves.

Jeez. add the husband in Kandahar and you’ve got a Lifetime Movie of the Week!

(Daughter Number Two will warrant her own post later — she’s leaving us to go away to school soon and no doubt I’ll be in a teary empty-nest mood one day and write a sappy love post to embarrass and secretly please her. Plus, we need to discuss how much of her I can, you know, discuss.)

Here’s the thing, though. Being a (step)mother has completely altered my life. Vicky’s disability has completely altered my life, altered how I see the world, how the world sees me. So it is also my story,  and I guess it’s time to talk about it a bit.

Vicky and I talked about it the other day, and she told me that she didn’t care what I wrote about, and that she’s fine with it all. She just started her own blog, too, so if you’re interested click here to meet my fine (step)daughter in person…. Today she wrote an especially fabulous, funny poignant and strong blog. It made me run back here to this  draft and start working again. I’ve started this more than once, and it’s tough slogging for some reason.

When I read specialneedsmommyblogs I tend to think they fall into a few different categories: the ones that make mommy seem like a Saint (and while my halo is a bit shiny, I’m definitely no Saint, lemme tell ya); the ones that are all about how Inspirational and Special their child is; the ones that have an overt religious message (like, “Billy’s being born with his eyes turned inward and flippers instead of knees is a Gift from God”… um, yeah, some gift, Thanks a lot God. Did you keep the receipt?). There’s also AngryBlog (with a lot of “why’s?” and not enough “how’s), the SappyBlog, the CheeryBlog….

You get my point. I know I’m not being entirely fair here, and I think that what I mean is that none of those felt to me like blogshoes I could fit into. I’m just not sure how to be authentic, how to fit all of these different sides into one blog space. I  knew that writing was therapeutic for me, and wanted to explore that first. What’s funny is that writing about her is probably the best therapy in many ways. Wonder what took me so long to get to that point?

So, as much as I may not want to be a “mommy blogger” (whatever that is – and many  heartfelt apologies to all those women out there who want the label), there are days when I want to write about this very important part of my life. It is important, and it is worth talking about. And let me tell you – “stepmother” is not always an easy role. And while I’ve been  so utterly fortunate in that – there was a hole to fill, and I stepped  right into it, into their arms – there’s a whole book in that, I can assure you.

All that said, “Special-needs-step-mommy-blogger” seemed just a little too unwieldy, yeah?

some days, it's just there - it is what it is and it's part of the normal routine.

Vicky’s disability is both straightforward and very very complicated.  She was born with cerebral palsy, which is a sort of catch-all phrase for “we’ve ruled out everything else but see motor skills issues, etc.”. Her CP affects all four of her limbs, so they call her a “quadriplegic”. That does not mean she can’t move or feel — she’s not paralysed. It’s just that the messages she tries to send her muscles are often slow to get there, or get crossed somehow. She cannot walk, nor can she hold a pen or get herself in or out of her wheelchair without help.  There’s a whole long list of stuff that she can’t do.

There’s also a long list of what she can do of course, but in our culture, we often really focus on what people can’t do. We do this for a variety of reasons – in V’s world, doctors, teachers, waitresses, passersby… all of them tend to focus on what she can’t do. This is a convenient way to pigeon-hole her, to classify her. Certainly I do it myself sometimes – there are shortcut terms that we use when talking to doctors or nurse managers or social workers – she  “needs help with almost all of her ADL’s” we’ll say. (That’s “Activities of Daily Living” to you uninitiated.)

She also has a pretty severe learning disorder – called non-verbal learning disorder (NLD). I find this the most challenging part of her disability, largely because it means that her brain isn’t wired to “read” non-verbal communication. She is very literal

sometimes, and social/cultural idiom can be difficult for her to understand. She has had to learn her world in a way that would be challenging to anyone. Luckily, she was born with a really big brain and a sense of humour. I have learned to try harder to say what I mean, to rely less on lazy language, and to keep an eye out for potentially confusing situations that we’ll need to discuss later. These are useful tools for anyone, so yeah, it’s not all bad.

Vicky would, though, prefer very much not to have NLD, if given the choice. Navigating the world in that chair is hard enough, without not understanding all the signs along the way while she’s at it.

Some days, it's ALL there is.

Lately we’ve had trouble with the people who are contracted to do her care. She and I have been talking about this frustrating situation, and this morning she wrote about it (see above link). She understands very clearly, the primal link between herself and me, her caregiver. Probably in a way that I don’t always even register, she’s twigged to the concept that her very survival depends on there being someone around who will – reliably and safely – be able to do those things for her that she needs to do.

I’m just a nice lady whose kid has a disability. I’m trying as hard as I can to help her and the world naturalize this disability. I want her to leave my house and be a full citizen. I want her to be unafraid of saying “this care is not adequate”. Hell, there’s a LOT of things I want for her, same as I want for my other daughter — I want them to be citizens of the world, with all the rights and obligations that entails. I want them both to be pain free, as much as can be arranged. I want them to have safe places to live. I want them to have friends and secrets from their parents (not big ones, though, okay guys?). I want them to live in a world that is free of their feeling guilt or panic because they want to, say, get out of bed in the morning. Or, I dunno, not sit in their own filth because their care is unreliable.

See? Simple.

But I digress. I do that often when Vicky’s care is concerned. It’s pretty complicated. And it’s not just her, you know? It’s stories like this in today’s paper. It’s worrying about everyone else on that missing Aide’s roster — who went without food? Who slept in their chair that night? Who couldn’t get in touch with their emergency contact? Who didn’t want to complain for fear of reprisal of some sort?

This is the kind of stuff that literally keeps me up at night. Every time I start to bitch about something in Vicky’s life I start to think about other people less fortunate than Vicky, people who don’t have enough money or any family support. I’ve basically made her quality of life my full time job at present and I still can’t guarantee she’ll have it. It’s enough to make one weep. It’s what makes me keep doing this grinding, frustrating, agonizingly angry-making daily struggle to make the world see.

It’s why I was on anti-depressants for a while and felt like I wasn’t good enough. It’s why I often felt guilt that brought me to my knees – I wasn’t doing enough, doing it well enough, doing it nicely or politely or in a way that wouldn’t make me crazy. I’ve become a kind of weirdly earnest,  annoying zealot. Did you read what I wrote earlier? “I’m just a nice lady whose kid has a disability. I’m trying as hard as I can to help her and the world naturalize this disability.”

Who the hell write that they just want to help the world naturalize disability? hee hee. Only the parent of a child with a disabilty could write that with a straight face. Why don’t I just try to cure world hunger and bring about world peace while I’m at it, eh?

I’m working on that.

How? Well, this blog today, for one thing. There were days when I wanted to write – felt positively itchy with the need to write something, but didn’t. I didn’t write because I was afraid: afraid that I couldn’t concentrate on the task at hand because I was dealing with day-to-day life for Vicky; afraid that writing about it would seem whiny, or that it would make me angrier, or weepier, or make her feel bad.

How is it that I live in a world where my daughter feels bad because of a condition that none of us had any control over creating?

So. Everybody has that something that is their cross to bear, you know? What writing and reading about this does is put it all in perspective. All those blogs I mentioned earlier? They may not be “me” but you can bet that I read as many as I can find. I may not always agree with them, but they sure as hell made me realize that I’m not alone in this ridiculously complicated world of parenting a child with special needs.  Writing one adds my  voice to the mix.

Vicky is empowered by the internet and is finding her voice, there and out in the “real world”. I’m trying to do the same, and the only way I can do that comfortably is to turn up the volume a bit, make those silences disappear. What I can tell you is that the daily work of making the world see and hear my daughter is more accessible all of a sudden. And I’m not alone in it, because I’m following her lead now.