Friday, 5 September 2014

If Only

Right now I’m taking a break from the copious amount of admin I seem to be slowly drowning in and coming up for air via the snorkel of this blog.

First up, I’m proud to say WE SURVIVED! By survived I mean we got through the full 60,480 minutes of the school holidays in one piece; alive, breathing, and relatively unscathed. I wouldn’t go as far as to say we got through it well, that would be an altogether different scenario. The reality is the matrix of destiny (aka the calendar) that dictated who was where at what time and for how long left its inevitable imprint on our uber tolerant children. Like a game of human Tetris any deviation from the perfectly tessellating plan resulted in it all spiralling out of control pretty quickly. D and O were fairly amenable, but BH did not take kindly to being shunted about like a heavy piece of luggage. Holidays for us do not equal lazy lounging days or fun spontaneous day trips. They involve a carefully executed master plan of action, involving a juggling act with lots of lovely carers to ensure B’s 1:1 support needs are met at all times. Mostly it isn’t all that fun, and it leaves a constant bitter taste in my mouth that I am failing someone somewhere along the line, which in reality, I probably am.

I can’t begin to explain the frustration of knowing the parent you are capable of being versus the parent you actually are due to the shitness of your circumstance. But then, we all have our limitations. I mean, we could all be these perfect parents if only… if only we had more money, or if only we had more family support, or if only our kids were less like little shits, or if <insert personally appropriate situation here>. So why do we beat ourselves up by conjuring up the mythical if-only version of ourselves and pinning it firmly to the fridge of life where it perpetually haunts us, reminding us of the shiny life and kids we might have had. If only.

I call bullshit on the if-onlys. The life we have is the life we have, warts and all. Now some of my friends would get all philosophical at this point and tell me that everything happens for a reason, including the nasty bits of existence. I hate to be the person to shake it up and cause controversy (gasp) but I call bullshit on that too. Here’s why.

I recently read a FB post from a dear friend who also has a child with B’s condition. In it she detailed the differences in the detail of a typical child returning to school after the long summer break, and one of our kids returning. It honestly broke my heart, mostly because her boy also struggles with seizures like B, but also because key times like this (back to school, Christmas, birthdays) act as a spotlight on that mythic if-only fridge picture.
Our morning goes a bit like this; we still have to dress our kids for school because they can’t do it independently. We have to tally the number of seizures our kids have each day. Let me say that again, we have to tally the number of seizures B has because it is the only feasible way of recording the vast numbers he experiences. We have to feed our kids breakfast because they can’t do it themselves. We start the day with no clue as to what is going through our kids heads, and we end the day no closer to any understanding. We watch our kids seize multiple times before the school bus arrives, always watching carefully to decide if we need to take any further action. We play medication Russian Roulette religiously every morning. We constantly shun our other children because we are too busy preparing the paraphernalia around our special kid; writing in the home-school communication book, observing and recording behaviour, gathering the meds, change bag, and anything else needed for the day. We (try) to use the cue cards to prompt our kid as to what happens next. And so the list goes on.

I call bullshit on the if-onlys, and I call bullshit on the everything-is-for-a-reasons. It is what it is. Do I learn and progress? Of course. Does this crap make me a better person? Probably. Could I have learned those things without losing my little boy one seizure at a time? Definitely. Do I love my kids but wish it were different? Yes, yes and yes! But like I said, to a greater or lesser extent, don’t we all wish it were different? I suspect so. So friends, stand with me today in a unanimous middle finger raise to the if-onlys and the everything-is-for-a-reasons. Grab this little bit of life right now, minute-by-minute, day-by-day, beautiful bits, beastly bits and all.


‘Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.’

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………