Tuesday, 26 August 2014

Sibling Syndrome

So today would have been my mum’s fifty-sixth birthday, but she never made it this far. For whatever reason, she had to go at the tender age of fifty-four and a bit. It also happens to be my daughter’s ninth birthday- I can never quite decide whether that was poor planning on my part, or a decent hand well played by Fate. We ate cake for breakfast, made pancakes, and I waved O off as she merrily left to visit her grandparents. I hung out with my little sister; we had lunch in a cafĂ© we occasionally visited as kids, that happened to be re-opening today after a lengthy refurb *cue spooky music* bought flowers and took them down to the river where we launched them one by one (speedily-sorry mum) in the pouring rain while saying ‘Happy Birthday’ in as many different accents as we had flowers. We know how to live, the little sister and me! The ducks were none that impressed when they quickly realised that the lilies weren’t the bread they’d been holding out for, but other than that a fairly un-sad and successful trip. They say time is a healer and that would seem to be true, at least in this case. We still both miss her on a daily basis, but remembering her doesn’t hold quite the same sting anymore.
In other news we are struggling on an epic level with our five-going-on-fifteen year old. I’m fairly sure anyone who knows me would say I was a pretty chilled parent; I have that whole opposite of control freak thing going on- some may call it ethereal, others just disorganised. I try my best to let the bad behaviour pass me by, I am NOT a fan of supernanny, and if you asked me the value I most want to encourage in my children, it would undoubtedly be free-thinking. Martin Luther King, Elizabeth Cady Stanton, Florence Nightingale, Mary Seacole, Emmeline Pankhurst, Mother Teresa, Sigmund Freud, and many others- examples of incredible fearless people who valued individuality and human rights over any of the constraints society and culture shackled them with. 
As Henry David Thoreau once put it “Disobedience is the true foundation of liberty.” I totally agree with this. And yet, what the heck do you do when that free thinking person happens to be your little shit of a child?  She questions everything, and I mean everything. When I ask her to please do something, she asks me why, thinks for a moment and then makes an informed decision, mostly to the tune of no thanks mum, piss off. Thankfully she doesn’t know any swear words yet, so hasn’t actually ever told me to piss off, but I don’t reckon that particular issue is too far round the corner. She went a bit crazy the other day and smacked me, so I attempted to pull the supernanny routine and sit her on the ‘naughty step’ for two minutes. She promptly got straight up again, and so I placed her back on the step and informed her that any further attempts to leave said step would result in a loss of pudding. She loves pudding, but even this wasn’t enough to thwart her crazy bright freethinking little brain and sway her into conformity. She proceeded to ask me what exactly we were having for pudding, in order to weigh up whether it was worth staying on the step for. Facepalm. The child also happens to be no respecter of persons; the thinking for herself and apparent rudeness can occur at any given location. She isn’t scared about taking on older children at the park if she thinks something is unfair, and she will definitely speak her mind if asked a question by an adult, regardless of any social constructs and without concern for how her response may make them feel. Her school report stated ‘BP knows her own mind and is very confident in sharing her opinions.’ I know a few teachers and up until July I worked in a classroom, and that little statement basically translates to ‘how the heck do we tell you your kid is a non-conformist nightmare child.’
So it got me thinking; how can the very thing I value so much in child rearing also be my biggest bugbear?! And I think the answer lies in the fact that B happens to be reacting at a level way beyond her years. She responds with the thought processes of a child much older, and with life experience even most adults won’t ever have the pleasure of. You see she’s my fourth child. She comes after my very special boy, a kid who needs around the clock 1:1 attention. She bears the brunt of B’s frustration on a regular basis and has the bruises and scratches to show for it. She watches her brother seize up to 45 times a day. The phrases she most often hears are, ‘BP, just wait… please wait… not right now… I’m in the middle of dealing with B…go ask your sisters…I can’t right now…hang on…two minutes…’  Conversations are regularly cut short in order to rescue B from some predicament or other, her older sisters, while very gracious to a point, understandably get annoyed with her banging on and on at a constant high volume. She wants to be heard and yet so often, through circumstance alone, her voice is drowned out by generic chaos. We try and set aside Mummy-B time, which she laps up, but as soon as regular life kicks in again after that little oasis she defaults to defiant little devil. 
So the more I chew on it, the more I realise the impact of having a special needs child radiates out to the whole family, and more than that, has an immense effect on the baby born after him. Emotional exhaustion, physical fatigue, sleep deprivation, adrenaline insanity, system fighting, advocating and the day-to-day chaos of living with four children, one of whom you literally cannot take your eyes off for a second, are all ingredients for a less-than-ideal environment in which to raise a little girl. Sibling Syndrome. My guess is it’ll go one of two ways; either I’ll end up with a compassionate, strong survivor or I’ll end up being a granny at 40! I haven’t got a crystal ball, and of that I’m very glad, because if I knew what was the next curveball in the game of my life I might well just give up now. So I’ll keep trying my best, even when that best seems so far from good enough.
The next time you see a kiddo kicking off (especially if it happens to be mine!) please try and view it through the kaleidoscope of context. And if you don’t know the context, don’t succumb to the judgey constraints of social appropriateness just because. Yes, a child may be displaying definite signs of Spoilt Shit Disorder, but they may also be showing old before their time, freethinking Sibling Syndrome traits.
‘Disobedience is the true foundation of liberty.’ Henry mate, I f***ing hope you’re right.

*Since time of writing I have set up a funding page to try and get out to a conference about my son's rare condition. Please head over and give if you can.

Monday, 14 July 2014

The Dead Seagull Society

So lovelies. Today life sucks. I’m not asking for pity, or sympathy, or any of that mushy stuff; it is what it is. I think it’s down to a combo of factors; tiredness, getting shredded on a daily basis, missing family and perpetually grieving the life we watch everyone else with kids our age living. By shredded I don’t mean that 30-day shred phenomenon that’s been going round on the app store; purposely putting my body through torment on a daily basis is something I can live without. Funny that. Shredded is perhaps too harsh a word but for the last three months my arms and the arms of my kiddies (particularly the littlest) have been covered in claw marks and small teeth imprints; the physical manifestation of the frustration my boy must feel constantly. We are entering the fifth week of a medicated B, and so far we are still seeing multiple seizures every day, with new types developing on a regular basis. I’m the reincarnation of Scrooge and Christmas when people mention their excited plans for the weekend or the bloody countdown to the summer break, if every day could be a school day that would suit me just fine. I feel a literal dread in the pit of my stomach when I think about the six week summer holiday, hurtling towards us like a thundering train, indiscriminately flattening everything in its path. I don’t want to allow myself the luxury of looking ahead to September in case I don’t make it through August!

So, getting beat up on the daily, being permanently knackered, watching my boy experience the monster that is epilepsy, and undertaking the epic task of booking in enough respite to make sure that everyone in my house is safe over summer does not make for a cheery smiley lady. Sorry folks. I’m also experiencing another wave of grief over my mum, and battling the perpetual grief of losing a life I didn’t realise I’d planned. I know it’s hard for people to understand since grieving commonly refers to the feeling people have after the death of someone important in their lives. For a long time I felt so guilty and unfounded in my use of the term grief, but what we deal with on a daily basis is just that, loss. I felt awkward for feeling loss when my child was right there in front of me. But once I’d delved into the recesses and processes of what I was thinking, I realised it wasn’t B I was grieving, it was the life we could no longer live because of B’s many and complex needs. And that grief is continual. There’s no end point.

After mum’s death I am gradually re-aligning my head to the new reality of a mum-less life, and although that’s tough, I imagine there will be a point where it no longer stings quite as much; when the salt of watching other people with their mums runs off scars rather than inflaming raw open wounds. B, however, is a constant in-your-face reminder of everything we CAN’T do as a family. Don’t get me wrong; I love my kids more than anything, B included. I would go to the ends of the earth and back to ensure their safety and happiness, something that is put to the test on a regular basis with B. Endless appointments, infinite fighting, physical hard work, becoming an expert researcher in meds and side effects and writing enough reports and logs on him to fill a bloody BBC archive. But as most people’s families grow up, their worlds open up too. Things that were impossible with babies morph into fun activities; going to the beach, heading out on a family bike ride, having a picnic, swimming in the sea, fun at the park, visiting friends. Even a freakin’ food shop is doable. Families like mine get left behind. A trip to the beach equates to S and me tag-teaming each other, running round like loons to make sure B doesn’t drown/run away/snatch other people’s food/steal random beach toys/attack strangers with inappropriate crotch-height faceplants. A family bike ride is the biggest gamble-sometimes B is happy in the trailer, other times not at all. If you judge it wrong you’re screwed. Riding six miles with a wailing traumatised child who is pulling his best Houdini escape-artist move is not fun. Neither is it safe. A picnic…. Hmmmm, have you ever played those maze games with the little balls you have to tilt into place? Yeah, that. Swimming in the sea involves attempting to convince B that he is not in fact a fish, and he really can’t swim to France yet. Fun at the park? Last time we went I had lots of fun wrestling a dead seagull from B’s clutches-he had it by the wing and thought it was hilarious to flap it about. Cue instant shrieks from me as I rigorously shook B’s arm (I wasn’t about to touch the bloody thing), aghast onlookers watching in shock until he finally released the poor creature. RIP Mr C Gull. Visiting friends… well, we gave up on that a long time ago. Infinite apologies. Once we visited a (very good) friend and B clumsily knocked over a one-of-a-kind wedding present vase. The friend in question burst into tears, I felt hideous and B was none the wiser. He’s a one-man destruction cyclone- shadowing him around someone else’s house and restraining him from, oh wait, EVERYTHING, is not my idea of a good time. Oh, and food shopping? Don’t even go there.

A family acquaintance said to me a few weeks ago I needed to stop comparing my life to everyone else’s. This acquaintance, might I add, has experienced minimal trauma in his life as far as I am aware, and as such is in a great position to be handing out advice to those of us with the audacity to voice the fact that life is bloody tough. I know it’s not a comfortable topic for people to hear. Imagine how much more uncomfortable it is actually living it. I’m not into the self-pity thing; it’s highly ineffective in making things happen, but when literally every second of your life is consumed by the life-you-never-planned, it’s nigh on impossible to avoid comparisons. It’s hard seeing typically developing kids the same age. It hurts my heart watching typical birthday parties, when B never even gets an invite and definitely couldn’t handle his own. So while, the sentiment of non-comparing is a great ideal to aspire to, the reality is very different. Hence the ongoing nature of the grief surrounding a special kid and the circumstances we find ourselves in.

Let’s look on the bright side; at least with a post like this the only way is up. Bring on the summer holidays. Come on, do your worst. I’ll do some sort of Hakka to get my head in the zone and I will survive. Cos that’s just what we do. We survive.

I’ll leave you with a few lyrics from my favourite Mumford song ‘After the Storm.’ This sums it up nicely.

Night has always pushed up day
You must know life to see decay
But I won't rot, I won't rot
Not this mind and not this heart,
I won't rot.

And I took you by the hand
And we stood tall,
And remembered our own land,
What we lived for.

And there will come a time, you'll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

Monday, 7 July 2014

Princess Bess and The Big Blue Problem

I wrote this story for someone I know who has a distinctive and visual disability (we're going to make a book together), and as I was reading back over it I thought it was quite pertinent to B also. The difference with B is he is absolutely unaware of the stares, it's my other kids that have to deal with the barrage of attention when we're out. Attention for all the wrong reasons might I add! Enjoy..

Princess Bess and the Big Blue Problem

Once upon a time in Amarillo Land there lived a princess. Her name was Bess and she lived in a castle with King Daddy, Queen Mummy and her baby brother Prince Tam. The castle had high walls and was decorated with beautiful flags and it was most definitely Princess Bess’s favourite place to be.  When Princess Bess was a baby, she spent lots of time in the castle with Queen Mummy and King Daddy. Being in the castle made her feel safe and warm.
Princess Bess was a little different to everyone else in Amarillo Land. All the other people she knew had bright yellow hair. This yellow hair was shiny, soft and golden and Princess Bess wished she had hair just like theirs. Her hair was blue- the same kind of blue as the deep clear sea. No matter what she did, it stayed blue. Once she spent a whole week eating bright yellow custard to try and change it, and another time she coloured her hair with 13 yellow felt tips. Still, her hair was blue. Her family told her all the time how special it made her but Princess Bess just couldn’t see the specialness. All she saw was how different she was, and it made her grumpy and cross. She looked in the mirror and saw a big blue problem. When she went out of her castle to school she knew people were looking at her and it made her feel all gloomy inside. Didn’t they know she couldn’t help it? Didn’t they know that’s just the way she’d been made? Another thing about Princess Bess’s hair that made it even more annoying- it got longer and longer and would not stop growing.  Even if she cut it, the next day it would magically return to it’s swishy blue longness. Sometimes it got caught on things and hurt her, making tears well up in her beautiful eyes. Other times it looked all messy because she couldn’t brush it properly and it tangled up like spaghetti. It made her cross.
One day on her way to school, Princess Bess met a frog hopping along the path. He wasn’t blue or yellow; he was green like the leaves rustling in the trees above. To her surprise, the frog began talking to Bess. At first the princess was a little confused- she stopped walking and stared at the bright green frog. ‘Hello,’ he croaked, ‘my name is Fred. What’s yours?’  ‘Err,’ stuttered the Princess, trying to find the words and wondering whether chatting to the frog was some sort of weird dream. ‘Er, my name is Princess Bess.’ Fred smiled a big froggy grin. ‘Why are you staring at me?’ he asked. ‘I’m sorry,’ answered Bess. ‘I don’t mean to be rude, it’s just I’ve never met a talking frog before.’
‘You know something?’ Fred said. ‘I’m the only one, the only talking frog in all of Amarillo Land. Sometimes I feel lonely. I don’t think any of the other frogs like me because I am different. Sometimes they laugh and point. They stare at me with their big eyes and it hurts my feelings. I don’t know why they don’t understand, I mean, it’s not my fault I was born with a voice instead of a croak.’ As the frog spoke he started to cry, and wet tears rolled down his face and dripped into a small puddle on the floor. Princess Bess knew exactly how Fred felt. She told him all about her blue hair, about how she wished she had yellow hair like everyone else, about how everyone stared at her and how sad it made her feel. She told him all about her big blue problem. Fred the frog listened carefully, and scratched his head. Princess Bess couldn’t be sure, but it looked like Fred was brewing up an idea. ‘Hey! When I met you just now and said hello, you stared at me. I know you weren’t trying to be mean, because I can see the kindness in your eyes. You were just curious right?’
‘Um, yes. I was just wondering why a frog was talking to me. I had never seen that before,’ stuttered Bess, thinking about whether Fred would be upset with her for staring.
‘When people haven’t seen something before, they stare. You stared at me. We would both stare if we suddenly saw a giant flying saucer in the sky. Maybe instead of thinking people don’t like us, we should think about asking them why they are looking. I think the reason may be because they haven’t seen anything as unique as us before. ‘
Princess Bess thought hard for a moment and realised the frog was right. Although she didn’t like people looking at her blue hair much she had to agree, everybody stares when they see something unique. Unique means super special and one-of-a-kind, just like a blue-haired princess, or a talking frog. She giggled when she thought about the talking frog hopping around at her feet.
‘So,’ she said slowly, ‘Maybe instead of getting all gloomy inside, we can ask those people WHY they are staring at us, just like you did to me. Then we can chat to them and make new friends.’ Fred nodded and smiled. ‘I used to think about my voice as my big croaky problem, but now I’ve met you because I can talk. That’s not a problem, that’s a great thing!’

Princess Bess thought about it. Fred was definitely right. If everyone was looking at her, at least she would always have people to chat to, even if they did want to talk about her blue hair. Maybe sometimes talking about her blue hair instead of trying to change it, or pretend it wasn’t there, was the right thing to so. She set off down the road to school chatting all the way to her new friend. With Fred by her side she thought she might be able to do this- maybe she could look in the mirror and smile tonight. Instead of a Big Blue Problem, today it would be her Big Blue Different. After all, different always has good bits too………

Tuesday, 10 June 2014

Diamonds In The Rough

One thing I’ve been learning on my counselling course, alongside the sheer bloody-mindedness necessary so as not to crumble in a crying heap in the corner, is that the ability to get through tough stuff depends hugely on the ability to find joy in life. For those graph nerds out there X (being survival of the shittest) is exponentially linked to Y (capacity to find fun). Some of the most awesome people I know fall into this category, time and again shedding the skin of sadness to make room for the wings of delight.

Now let me make myself clear, I’m not a fan of those Facebook fakes- you know the ones, the people who clog up your news feed with zealous tales of bliss every three seconds. Prosecco and besties- happy days! Fun family times #funinthesun Best weekend ever- love my crew! Off on adventures #holidayamazingness. These people’s blasĂ© approach to exclamation marks and blatant overuse of upbeat adjectives honestly makes me want to punch them in the face. No, I’m talking about the people who, in the midst of crap, choose to look for diamonds in the shit. The seemingly effortless grace and composure to smile when they want to sob. The way they handle idiot comments and advice from well-intentioned people who know nothing. Their calm restraint at resisting violent urges when the awkward pitiful looks come their way. These people don’t deny their crap, or the way it makes them feel. Tears flow freely, but laughter comes swiftly. Grief is sharp and bitter, but joy tastes all the sweeter. When big shadows loom, dappled light is all the more obvious.

I used to subscribe to the thinking that my happiness depended on my external circumstances; my friends, my family, my husband, the church, even God. In the last few months I’ve woken up to a whole new way of thinking. The only person responsible for my happiness is me. And since I figure we have a relatively rough deal, the whole disabled kid thing is not an easy gig I promise you, I need to step up my quest for pearls among the swine. Life tends to go in waves for us, and just as we get used to things, the tide turns and we have a whole new landscape to contend with. Currently that tide-shift has been the start of B having seizures, a real sucker punch in the context of his already complex chromosome condition. Statistically we knew it was likely, but up until recently we were able to live in the hopeful fantasy that we might have escaped that particular demon. No such luck. Statistically too, the seizures that come with the dup15q tag are complex, diverse and often intractable (difficult to control with medication). So you can imagine our heartbreak with this new development. To bury my reactions would be foolish, to indulge in denial and crack on regardless would be not only dishonest but also detrimental, and it would come back with a vengeance to bite me in the arse later. Equally, allowing myself to be defined by my situation would also be stupid, and hugely impractical. I don’t want to spend my life in a sad blue bubble; I need to raise my kids, I need to fight, I need to have leftover strength to smile so my face doesn’t end up looking like a wrinkly dog’s bumhole.

On that picturesque note, here is my attempt at uncovering mirth in my mundane. These are things that always make me smile.

The smell of the sea.
The waft of wild garlic when I’m walking down middle chine.
The way the sunlight glints and dances off the ocean on a sunny day.
My hilarious five year olds’ regular ridiculous outbursts; on seeing a goth/punk/emo dude in full trenchcoat get-up: ‘MUM! Look at that wizard!’ On the swing: ‘Oops, my shoes fell off, oops, my socks fell off, oh no, what’s next, my vagina will fall off.’
The genuine magical ecstasy when one of our chickens lays an egg.
The looks and laughter in people’s eyes when I explain that each child named a chicken; Rihanna (Bl), Popcorn (O), Hulk (D), and Ooh (B). We are an inclusive family, even when it comes to our non verbal son naming his chicken.
B face planting people’s crotches at random when out and about. I choose to laugh, in all fairness it is pretty funny.
Exciting post. Like snail mail. Nothing better than exciting snail mail.
Amusing myself by smiling and waving madly at strangers going past in the car, watching their looks of baffled bemusement.
Seeing how polite people will be on the train to work when I start chatting to them as if I know them.
B’s infectious giggle.
Watching my kids when they don’t know I’m watching.
Full moons and starry nights.
Going to the cinema and being absorbed into another world for two hours.
Riding full pelt down a hill with the wind in my hair, shutting my eyes for a second and pretending I can fly.
Sandy toes.
The feel of twine and paint on my fingers when I’m busy making pretty things.
Belly laughing with my friends.
Being the cause of the belly laughing of my friends.
Dancing in a club to the loudest music ever, especially when it’s an oldskool tune and no one knows it except you.
Making people smile.

People who find sparks in the gloom have a means to escape the cave. Or at least survive it.