For the past twelve months or so, Mr and I have been struggling with Smiler. Not with his behaviour exactly, but with the level of support that he needs pretty much around the clock, and the never being able to switch off. It's difficult to explain to anyone who hasn't been there, it's hard for them to understand just how draining the constant watchfulness, the always-on-edge-ness really is, combined with the physical demands of caring for him; the never-ending paperwork and appointments and admin involved; and the other world that you mentally move into when something actually does happen that means you need to be able to list the names, strengths and dosages of all the meds, as well as consultants, and details of every relevant aspect of his condition. Knowing that at any moment he might have a fall or a fit or a bleed or a dislocation - even when he's at school we know that we might have to drop everything to meet his ambulance as it pulls into the Children's Hospital. And when he is with us, we have to keep an ear out for him every second that he's not in sight, because this young man can go from completely fine to really, really not fine in seconds. But as well as the psychological strain of this, it's the sheer physicality of being his parent - of dressing him, and feeding him, and doing up his seatbelt. Brushing his teeth, and putting on his splints and shoes, and walking alongside him so he can hold on to your arm. So many of the things that we do for him are tiny tasks in and of themselves - getting him a drink, putting on his deodorant, reading him a story, but when you add them all up it's exhausting, and there's no let up. I believe that there's an ordinary route that you follow as a parent with your child, and though every child and every parent is different, and of course this influences their journey to a certain extent, they still walk the same general path.
As a parent, you start off with a baby that you do everything for. You dress them, you feed them, you burp them - you spend every minute picking them up and putting them down, singing silly songs, reading about how to encourage language development and worrying about every temperature and rash and cough.
After a year or so, your baby is becoming a toddler, and now you reach out your arms as they stumble towards you, clapping as they use those chubby fingers to put the wooden square into the space on the board where it belongs, smiling as they babble at you, giggling when you realise they're trying their hardest to make the animal noises as you sing Old MacDonald at play group one day.
A year later they have all the lyrics of Old MacDonald down pat, as well as those of Row Row Row Your Boat, Incy Wincy Spider, and probably some completely inappropriate song like Blurred Lines or Uptown Funk that is played on the radio a hundred times a day. And that other sound you hear a hundred times every day? That is that little child of yours asking you why.
Then one day you suddenly realise you don't remember when the last time was that they called you into the bathroom to wipe their bum - they do it themselves now. And while they might still need you to cut up some of their food for them, they have well and truly got the hang of getting it into their mouths, thank you very much!
A few years later and it's their first day at school - maybe they trot away from you happily, barely even tossing a "bye" over their shoulder, or maybe they struggle, reluctant to let go of your hand. Maybe they're fine but you have to turn your face away quickly because your eyes prickle and you can't let them see how the thought of them taking this step towards their future, this step away from you, makes your breath catch in your throat.
A few months later you smile as you drive past the school, glimpsing the children chasing one another around at lunchtime, laughter and shouting and footballs and grass stains on knees.
Fast forward a few years, and they're walking home from school without you for the first time, with their friends for the first time, while you anxiously watch the clock knowing they should be home any minute now, and of course they're fine, maybe they're just dawdling in the playground, relishing this moment of freedom, and of course they're fine, but perhaps you should walk down and meet them, just in case they've become lost on this short journey that they've taken by your side a thousand times or more, and of course they're fine, but they really should be home by now, unless they've been hit by a car on the pedestrian crossing, or pushed into a bush by bullies, or abducted by a pervert in a white van, then you hear them by the front door and take a deep breath and pretend you were getting something off of a shelf and hadn't even realised it was that time, as you casually turn around, and of course they're fine.
Another year passes and now you're visiting secondary schools, expected to know what questions to ask and understand the answers you're given. Teachers show you classrooms full of computers, unisex toilets and science labs with the thick wooden workbenches and Bunsen burner outlets you remember from your time in school labs, with initials carved deep into the wood, tales of first love scratched next to teenage grudges, infatuation and aggravation side by side. You glance at your child and then these teenagers, marvelling at how all the students are all so confident and cool and composed, and look as if they're just a small step away from adulthood in their shirts and ties and blazers.
A scant year later and your child has somehow morphed into one of them, these smartly dressed young people who make their own packed lunch, tie their own tie and occasionally even does their homework. Instead of the long and winding stories about what happened at break time when Ms Smith felt dizzy, when you ask what happened at school today you get a mumbled "nuthin", because they're busy on their tablet or heading out of the door to meet friends or opening kitchen cupboards looking for something to eat.
The next few years pass so quickly in a blur of rebellion and pushing boundaries; homework and tests; friends and not friends and boyfriends and girlfriends. They're starting out on their own path now, their own ordinary journey, living their life and trying to separate from you, until "Can I borrow the car?" or "Where's my birth certificate?" or "What's a security deposit?" and suddenly they need you again, if only for a moment or two. There's the big stuff - moving out, going to uni or college or starting a full time job. Maybe finding someone they want to share their lives with, maybe phoning you in tears because they've had their heart broken. Their lives are their own, and though they may still hug you and ring for a chat, they no longer cling to your hand as you walk out of the front door and into the world, and they will never again need you in the same way as they once did.
Sometimes, in a quiet moment, you think back to those days of non stop chattering and school pick ups followed by sandwiches in the car before swimming lessons and then a quick supper before bed. You remember the intensity of their grief when the class guinea pig died and they emerged from the classroom, wide eyed and slightly panic-y as they told you about it, cheeks wet with tears, words tumbling out in the wrong order. You remember the feeling of holding them close and feeling their warm breath against your shoulder and the smell of their soft hair as you held them while they cried.
But when you are a parent whose toddler never toddled, whose ten year old never walked home from school with friends, whose teenager never rolled their eyes at you reminding them about homework - it's hard to believe that you're on that same path. It has different scenery, different pit stops, different companions. The experiences, the worries, the details - the journey that you're travelling feels a million miles away from ordinary.