I killed my cat, and other stories: Box 761 Death Edition.

Okay. I’m using that title to shock you.

Doesn’t mean I didn’t do it, but the preferred term is “euthanize“. Sounds much nicer, right?

Bo 1996-2011

Bo was my cat, but before he was mine he was my mother’s. He was a 24-toed (normal cats have 18), black-and-white puppy-like cat who was the charismatic and goofy reminder to me, daily, of my sweet, complicated, and sometimes troubled mother.

Shortly after Mom was diagnosed with the lung cancer that would eventually kill her  she and I had a chat about chats… they were great company, and therapeutic. I lived a 4 hour drive away and worried about her through the week – lonely, ill, alone. I told her they could help lower one’s blood pressure, etc. It was a short conversation, nothing really meaningful.

The next weekend  when I arrived at her house, there they were: two kitties. Oh I wish I could find their kitty pictures; they were so very cute. Bo was awkward – how many awkward kittens do you know? From the start he was  such a character.

She was delighted with her tiny charges (too young to be away from their mother, I always thought). She bought them in Perth, maybe Smith’s Falls (?) – towns I for some reason always get confused.  Whatever. She got them from a pet store (kitten farm, I always figured) in one of those places, anyway. I guess it doesn’t matter much, though not having that small detail bothers me, a bit.

Mr. Bojangles (because he’s polydactyl and tap danced when he walked) and his sister Shirley Temple brought a lot of delight to my mother. Shirley was the brains of the operation, you could see her try to herd Bo towards the food when it was time to eat (otherwise, we weren’t sure he’d find it, to be honest). They were delightful and sweet and really a completely ill-conceived purchase, but who cares, right?

my beautiful mother, 1935 - 1996

Three  too-short/too-long months later my mother was dead, and we were exhausted.  It was a hard death, and a painful three months leading up to it.

I was so out of it that the day we were supposed to finalize things with the funeral home I parked my car downtown and locked the keys in it – still running – and I didn’t notice. It ran out of gas in downtown Brockville while we tried to kill time before my long-suffering big sister had to go take care of business. That’s one of those stories that you never actually look back on and laugh at (I’m sorry again, Nancy, I really am).

It’s just kind of sad.

I can barely remember anything because of the weird white-noise in my head at that time, the hyper-surreality of it all. To this day, there are things I am not sure I’m remembering correctly; I just can’t get a grasp on them entirely.

It wasn’t easy, and it never is, losing someone.

What it is though, is weird. It’s weird getting used to someone taking medicine, or being in hospital not to get better but to fight death, to prolong the time before the inevitable. It’s weird feeling some relief when your loved one dies, but it’s better than watching them suffer.

That was an awful time. A time of confusing emotions and fear and pre-emptive loss. We had a complicated relationship, my mother and I, so it follows that her death was not simple for me. I loved her fiercely, but was often just confused by her otherness to me. I think she felt the same way. She once told me that I was too much like my father, perhaps that’s it.

She was in a lot of pain, and drugged, and often loopy; she was angry and vindictive and scared and sweet and confused and funny. She got paranoid, and plain nasty sometimes – I remember after a particularly obnoxious statement to me I hissed to her that I hoped it wasn’t the last thing she ever said to me, because she’d regret it. For both of us, I am thankful that it wasn’t.

Oh, the pain we cause those we love, right?

Don’t worry, there was sweetness too – many goodbyes and late night talks beside her bed – not about anything important, just talking and trying to be normal in a decidedly abnormal twilit hospital room. We talked a lot about her lost babies – too many, miscarried and lost, so many babies and so many lost dreams. We talked about whether she would see her babies in heaven, whether they would be grown or not. We decided that heaven is whatever you want it to be. I hope she met them there, and is having coffee and figuring crossword puzzles with them all right now.

But by then end of it, I was wrung out, and had stepped back from it a bit. You can’t sustain the emotional rollercoaster that someone’s  death creates without stepping back, sometimes. I couldn’t anyway.

So, she died. It wasn’t like on tv, people – it’s hard work to die, to take that last breath, to allow yourself to give up your ghost.  She laboured at it, and it was awful, even with the help of (a lot of) morphine to ease her way.

And yesterday, a coddled and comfortable fifteen years and 5 months later, Mr. Bojangles was stroked and whispered-to while our lovely vet Bruce reverently and gently sent him to sleep in my arms.

huh.

I’m not going to belabour the point here – you know what I’m getting at, right? I will be able to remember Bo’s death in a way that I cannot do my mother’s, and it’s not only because well, he’s just a cat. Those last too-short months of my mother’s life were so crazy, so full of fear and anger and love and loss and confusion over her care, her pain, her struggle. We did what we could, but it’s hard to have meaningful, pure memories of a time so full of conflicting emotions. With Bo, I had time to prepare, to love him extra-hard, to let him go before it all got too hard and it was muddied with pain and fear.

The choice to euthanize Bo was not one I took lightly, and it caused me pain. I cried about it – I’m not ashamed to say. He was senile, and still didn’t always know where his food was; he meowed and mewled and howled and caterwauled through the night; he was becoming incontinent. He’d lost weight, and his heart murmur was getting worse…. He still had some quality of life:  quiet moments, sleeping on the guest bed, cuddling on my lap at night, playing sometimes with the other cat.

The arithmetic of it was that Bo’s quality of life was declining and there were more bad times than good. He was not going to get better.

So I did what I needed to do, for him and for me. We will all miss him very much; he was one of our family. I am easeful, though, in my mind that he had a good life, and a good death.

Rest in Peace, my Boo Boo Kitty, and say hi to Mom for me, okay?

Box 761: Special Needs Edition

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

image courtesy of ClipartOf.comsometimes, 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.