“Taking steps is easy, standing still is hard”

Or should that be “sitting still is hard”?

My youngest daughter Geneviève is now crawling and pulling herself up on anything and everything to be standing and moving, more mobile, more independent. I’ve been crawling for years, I don’t know why it’s taken her entire life so far to learn what she sees me do every day. Okay, she was only 9 and a half months old when she mastered it, I’ll let her off.

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I always wondered what my children would think of their mum and how I do things differently to other people, other mums. As I’ve said before, I know that Amélie knows that I don’t walk, and that I use a chair. But does she know why? Does she query in her little head why I hold my fork with both hands, or a pen with both hands, why I crawl when I’m not in my chair. I wonder if she knows that I could walk, but can’t now. Would that scare her? (this is going to be full of rhetorical questions, apologies in advance).

And now my second baby has started her own little journey to becoming more able than I am. Not that I would wish for anything different, but it does sting a little to think they’ll never know me as ever having stood up. I have one short home-video clip of me, rather precariously, walking out of our house and down two steps aged about 11. I’d like to show that clip to my girls one day so they know that I have once and for the majority of my life (for now) been non-seated, and to enlighten them a little to the assortment of abilities they will observe in people as they grow up.

Every time I do something that one of my children needs me to, and I mean something mundane like opening a packet, or helping my three year old take off her clothes, I do wonder whether at some point Amélie (and Geneviève at a later stage) will start consciously comparing me to other parents, other people, and their lives with other children’s lives.

Amélie has, before now, gotten frustrated at my lack of ability in helping her do things, I am sure. It hurts, but slowly she has started accepting that I can be of use to her in some of the same physical ways that her daddy is. She has recently started offering me the sleeve of her top when she can’t pull her arm out, knowing that I will grab the edge of the fabric with my teeth and let her pull her own arm out. Like that’s totally normal. Oh crap, I’m an assistance dog, aren’t I?

It’s little things like this that make our family so vastly different from everyone else’s, despite our best efforts to remain blended in with the rest. It’s when we’re with others in the public domain, and when my girls are of the age where they know that people do unfortunately make assumptions and come to irrational conclusions about others, that I really fear for what they might go through. This is something that I’ve already been preparing them for, I hope, by just doing what I need to for them. Regardless of who’s watching.

Will they have to ‘defend’ my capabilities, my ability to talk and make decisions, to look after them, to be just as much a parent as daddy, when their new friends, or ferociously curious peers start interrogating them in school? There’s too much to think about and wonder. An endless black hole of questions with no answers until the time comes.

Until then, then.

Everybody owns the great idea

I’m stuck. Still stuck.

Not in a hole don’t panic. Stuck not knowing what to do with myself. I’ve been back at work for three weeks now, and whilst I’ve enjoyed being a ‘colleague’ again and shocking everybody by being a disabled person who is indeed employed, I’m not sure what I’m doing or what I’m supposed to be doing. I worry that I’ve got to the stage where I’ve spent too long in recent years at home with either of my babies, that it is getting harder to be a staff member around other parents attempting to offer my own, often very biased, advice in the hope of supporting parents to raise their children. At the same time knowing that any new parents I meet are probably wondering what the hell I’m offering advice on weaning for, disabled people don’t have partners and therefore children! Just ask Travelodge.

I’m finding it even more difficult sometimes to speak to people I don’t know, than I did when I was younger.
Approaching a group of chatting mums trying to get them to sign into a play session or answering a question in a team meeting still gives me the heebeejeebees (that is indeed how I’m choosing to spell that word). I thought that kind of feeling, the kind where you try to swallow a dry golf ball, was supposed to go away when you leave school and the days of standing up in front of everyone to read your analysis of a poem, or rather, having to ask a whole row of sweaty school peers to move so you can get your wheelchair to the front of the class, reluctantly, feeling like you might die as the desperately sharp-edged feeling of “please-don’t-make-me-do-this”, wedges itself in your throat alongside the dry, bumpy golf ball…. Where was I going with this? Ah yes, social anxiety. The bastard. It’s kind of getting in the way of my career plans, whatever they are. Because it is there, all the time. All the frigging time. Let me show you.

I love shopping, but there’s a shitty feeling that comes over me when I’m in Sainsburys debating on whether to be frugal and buy basics baby wipes, or splash out on regular Sainsburys wipes, but, wait, why is that person looking at me? Do they think I’m weird? Are they wondering if I’m just another incontinent disabled person trying to choose my own arse wipes, pretending that I have a baby at home to necessitate the baby wipes? I just said arse wipes didn’t I. Moving on, I might be being watched on CCTV too right? I only have two arms, both integral to propelling a manual wheelchair so I promise I’m not shop lifting when I put things on my lap after picking them up so stop watching me! And yes, I can often be seen wheeling up and down the central aisle of a supermarket and yes, I probably do look like a toddler who’s lost her dad, but honestly, I just got distracted by a buy-one-get-one-free on curry sauce jars, and I appear to have lost my Tom, but don’t worry I’m going to find him near the Sauvignon Blonk. Please don’t look at me like you want to take me by the handles, pat me on the head and return me to customer services where I’ll be retrieved by my owner.

And that’s just the shopping issue. Alone, I’m a paranoid nervous wreck in my head, but shopping with others and I feel completely (somewhat) normal. Ish. Public performance of any kind, pains me. Just ask my mum, she was the one who had to speak the words of the Brownie-Guide promise because I had burst into hysterics from the thought of speaking in front of others. I even pick and choose anecdotes when chatting amongst friends, knowing that if I talk too much I’ll start cocking up my own sentence structure, and I can’t be doing with that. Or I’ll talk too much and my ‘hoarse voice’ will tire and need some time-out. Neigh.

I love writing though, I’m not too afraid of writing. I love words. I love music, lyrics, signs, adverts, stories, autobiographies, blogs, Tweets and of course cryptic status updates on Facebook. I can say what I like and what I mean. But put me in front of others and pretty close to 80 percent of the things I say, I’ve said to myself in my head to check they won’t make me look like a twerp. I come to work armed with a bunch of stock-phrases, ready to hand out in response to most things I get asked, which means more time to mentally prepare for the more intricate verbal encounters. Ask me how I am, I’ll say “not bad thanks, how are you?”. I promise I will say that.

I think I need a career where I can say what I mean, what really matters, by writing it on my phone, in the car, while we are listening to Dark Side Of The Moon, with the boy next to me and my babies asleep in their carseats, knowing that writing is pretty much all I can do on my own. Like a clever girl.

@shopgirlygm