Magic

This long hot summer has seen us more and more at the beach.  It is where Charlie is in his purest form, electric with charisma and humour and losing his pants to gravity with the ferocity of his path through the salt water.  cropped-dsc_0125.jpgThe carefree happiness emanates from him.  Standing still on the sand in quiet conversation with himself one minute, then dancing off like a grace note, rolling down the shoreline, squealing in a staccato euphoria, making his strange tai-chi shapes in the air, drops of water falling from his fingertips.  DSC_0121It is a shot of adrenalin to see.  Quite magical.  A sight I never imagined I’d see again.  Charlie crashing through the waves, thighs like Thor, his smile as broad as the sunny horizon.  I point my camera at him thrilling at the attempt to capture him down the tunnel of my lens.

It is a very wonderful life we have but sometimes hard and complicated. This confusing and chaotic world of ours leaves Charlie muttering worriedly, ticking and shouting at strangers.

Given his cancer diagnosis I quite often ponder that he wasn’t even supposed to be in my photo frame.  I think about it a lot these days.  The future, the present, the past.  What really does happen when you die?  What’s the point of all of the now if it is over so quickly?  Big questions wondering if he does get to lead a long life, what might that look like? Will he manage to be independent or will he remain ever vulnerable? Dark and desperate questions every parent of a disabled child has to face.  And then come the questions about his cancer.  The ever present questions hovering in the atmosphere.  Ominous and unanswerable.

But life isn’t always about questions.  Sometimes its feeling his warmth as he leans into me for a hug and a brief moment’s break from Minecraft.  image.jpgSometimes its smiling, watching him run into his new classroom and forgetting to look back at me in goodbye such is his excitement to be a part of his new school.  As a girl I remember reading Nabokov’s Lolita and I’ve been forever haunted by Humbert remarking on the absence of Lolita’s voice from the chorus of children at play.  image I hadn’t heard Charlie’s voice mingle with the melody of other children until his starting school this September.   These little moments are golden.  These simple, everyday moments and the fact that I still have them.  That is magic to me.

 

Comedy and Tragedy

Today was every autistic parents nightmare.  I had a full tank of diesel and with Charlie and Floyd in the car I horrifying found that my card was declined at the local Tesco garage.  My first thought wasn’t the embarrassment of the some twenty people waiting behind me but that this wasn’t going to be a quick fix, that this was not part of Charlie’s routine and that I was moments away from having to deal with a serious meltdown. Ten minutes in the kiosk and my heart was racing and hands were shaking on the phone to Barclays as I peered out at the car and thought I could see Charlie gesticulating wildly, crying and shouting.  The Staple Singers came on the radio in the kiosk singing ‘I’ll Take You There’.  Laughing, I remarked in too loud a voice “Jesus, I wish someone would take me there!”.  There were a few polite, nervous titters from the people behind me in the queue, probably wondering when the woman with the wild hair that I’d forgotten to brush that morning was going to get it together.  Others rolled their eyes or scowled.untitled (10) Unfortunately I’m one of those people who say inappropriate things when they are a little nervous.  I looked at them in the queue and thought bitterly if only they knew the half of it and I wondered what unspoken mire they were all dredging through that day.  Twenty minutes in and I was close to imitating Basil Fawlty with his mini cooper.  I was breathless with agitation and in a panic.  Finally I was allowed to pay as the fraud restriction on my card, thanks to some dude in Thailand, was lifted.  I bolted back to the car to find the inside an oasis of calm.  Charlie, who hadn’t wanted a toy at Tesco and had opted for a Kelloggs cereal variety pack was engrossed in reading aloud the nutritional information and distribution addresses for each of the little individual packets.  DSC_0057Floyd too was zen-like in the boot.  A hairy Buddha. As there was nothing else to do but laugh I reflected that perhaps bad luck wasn’t personal or part of some grand plan for your life, just totally random, like I was little more than fluffy particle floating on a breeze waiting to bump into something.

A sense of humour has always served me well when we’ve been in troubled waters.  I needed it during Charlie’s MIBG scans, when trying to avoid looking at the almost heaven-like illuminated ceiling above the scanner with blue sky and clouds, his sedated body below it strapped into the scanner looked like a corpse.  As I thought how inappropriate it seemed to make it look like the bloody pearly gates a tiny noise arose in the room.  The radiographers caught my eye across the room and we all looked confused.  There it was again.  Charlie was snoring.  Blissfully unaware.  And it was hard for all of us to stifle the chuckles.  Inappropriate a moment or not, it was funny.

Then again on the day of surgery when pacing around Whitworth Park with a tear-stained face, suddenly from the boughs of the trees there sprang the sound of an African township which made me stand still. DSC_0070 An installation by the Whitworth Gallery, I stood open-mouthed and listened to the sound of cattle, cars and voices shouting “Jambo!” and the absolute absurdity of that moment made me smile. Now when I think of surgery I think of Ghana and giggle.

And lastly on a riverbank this week we waded out looking for fish.  We talked about salmon.  And I got to thinking about that fish and the fact that it spends a large part of its life swimming upstream.  I admire that fish. Some walkers passed by the on the bank and Floyd attacked them in a frenzy of kissing, jumping and wagging due sadly to his poodle genetics. DSC_0074 Heading to rescue them from my over-zealous friend, Charlie began screaming behind me “Don’t talk to them!  Kill them!!” and pulled us both down into the water.  Floyd came running to our aid, the walkers ran away at the horror of us and Floyd’s bags full of poo that I’d been carrying bobbed away on the current downstream  DSC_0047“I’m sorry, I’m sorry” Charlie fervently pleaded.  Wet, stressed and looking round at my lot in life I replied theatrically “Do you know what Charlie?  I am a salmon.”  And we both laughed long and loud about that.  Him because he imagined the head of his mum on a salmon’s body and me because that’s how I cope when the swim upstream threatens to overwhelm me.

 

A Room With A View

IMG_0099 This week we rented a beach hut on St Annes Beach.  Charlie was instantly at home.  Trying to run, of a fashion, barefoot up and down the sand, sitting on the deck laughing at the dogs walking past and laughing at the girl from the next hut blowing bubbles our way. We will be doing more of this as we are back to homeschooling.  The mainstream school Charlie started at didn’t last long so we are awaiting news of a specialist school soon.  Mainstream proved very upsetting for him and he became angry and depressed, more anxious than ever at the fact that I suppose he felt he didn’t fit in and couldn’t get his point across.

securedownload (3)It’s no coincidence to me that now he is being homeschooled again he has settled down and whilst he is a little bored and more than a little isolated he did manage to go to an appointment with his autism paediatrician which is a first as usually he has to be seen on a home visit.  Although he sat with his back to him and didn’t want to talk, its a step in the right direction.  At home Charlie is the opposite of what he is outside our front door.  He is quite relaxed, sociable, a storyteller with a fondness for jokes and his big hearty laugh I’ll bet can be heard down the street.  He is also the kindest person I’ve ever known.  All that changes when we step out of the front door.  Inside he likes himself, has some self-esteem, learns easily and chats incessantly.  IMG_0107Outside he is fearful of what people think and want of him and he becomes miserable, vulnerable, anxious and unpredictable.  The beach hut is a way of extending our daily walks with Floyd.  Opening up the possibilities of socialising in a natural setting whilst still being able to go into a room and shut the door if necessary.  Even then the hut remains a room with a view.  A breathtaking one. A good view for a person to drink in through the eyes.

For some time I’ve been thinking of setting up a small charity because I’ve been so moved by the suffering I’ve seen.  But a simple charity.  cropped-img_0137.jpgSomething slightly ‘work-like’ to give me a sense of purpose outside the day to day life of scooping up lego, reassuring Charlie that there are no bees in the house, cooking and filling in the holes in the garden that Floyd continues to dig.  So it seems its been right in front of me all this time.  Travels With Charlie as a charity.  It’s only purpose to provide families who have been affected by childhood cancer with a day by the sea in a beach hut.  Simple.  There wasn’t a day went by when Charlie was in hospital having treatment that I didn’t wish we were looking out on the sea, when I wished we could hear the cries of gulls rather than the cries of kids having nose tubes or a cannula fitted.  I find the beach the most uplifting, beautiful, hopeful place.3  Oxygen levels are meant to be richer on the coast and it’s for that reason that years ago trips to the seaside used to boast of ‘taking the cure’.  Whilst it makes me smile a little, I can’t argue that fresh sea smelling air, sunshine, the wide open horizon and the lapping of the water on sand won’t make a person feel better.  Whilst Charlie was recuperating we would drive down the coast road every day, all through spring from Lytham, past St Annes to Blackpool.  Driving down the Golden Mile that I had always previously found hideously tacky took on a new meaning.  I was still with my boy, although he couldn’t walk and still looked ill, he was still my co-pilot in the front seat, smiling a little as we drove past the sand, the piers, the tourist attractions and looking out to sea at the sunsets every night we found a new routine that seemed to spur us both on and give us hope that things would get better.  And they did.  IMG_0068Come the summer months we would take Charlie’s trike down to the promenade.  Whilst he still couldn’t walk he’d build the strength back in his legs by riding his trike every day until one day in the warm summer sun, next to the waves, he found he could walk a little.  In autumn whilst he was still afraid to do much outside of the house, we would drive through the illuminiations along on the waterfront in Blackpool, through the thronging crowds that were laughing and eating candy floss, past the bright lights and rides twinkling against a black canvas of sky and Charlie would feel like he was part of it. More smiles. IMG_0081 More hope that things would improve.

So for families that have been through the same, a day by the sea, I hope will make them smile, give them a sense of calm for that day, perhaps make them feel that things might get better for them too. A place to make memories and smile over again when they go back to hospital for treatment or for those families who are the other side of treatment hoping never to need to go back to it, or for families who are without the child that their lives were once so full of.  In every situation its a day to be together and that in every way, life carries on and that what you do with it is up to you.  And a room with a view becomes suddenly much more than just that.

Cattywhampus

A little while ago I woke one morning muttering the word ‘cattywhampus’ to myself. I’d never heard it before but it rolled around my head so much that I decided to google it. Oddly enough it means ‘in disarray or disorder’ or ‘gone askew’ and lends itself, I think, incredibly well to describing mine and Charlie’s life.image

We are shortly to be living on our own again. My wonderful long suffering parents are due a break. Having sheltered us from another storm Mum has been banished to the garden to dispense her calming wise words through a plume of cigarette smoke amongst the palms, not having been able to do so inside because of Charlie’s health. imageDad, ever frustrated at retirement, at not being able to jet off to some distant destination to work has taken to obsessively drawing the amalgamation of Ireland and England as if in some nervous frenzy and has had to curb his rants about our political leaders because of Charlie’s anxiety. There they sit, both divorced from each other years ago, but still co-habiting nonetheless. She smokes, he draws, in an attempt to distract themselves from the lingering question “How has this happened to the grandson we love so much?” Smiling still at the circus that is Charlie and I, they have been thrown over the big top by the arrival of Floyd the dog. imageResident sex pest. Tis a complicated and comical household.

Charlie meanwhile has become a schoolboy again at a small village school. He goes for three hours a week and progress is slow as we start the painful process of trying to develop relationships between him and the rest of the world. In truth there are so very few people he connects with even though like a territorial canine he would like to physically connect with the postman each morning. There are still nude days aplenty and I ponder for how much longer it can stay relatively amusing before I eventually have to start telling people he is a practising naturist. And there are many muddled and anxious days and cancer takes a backseat to the ever present, always apparent autism. After five years of tinkering with behavioral therapies, speech therapies, diet and supplements we are still at base camp, the summit hidden in the dark clouds above. imageWhile I busy myself this week in creating conversation sheets and comic strip scenarios, in making sauerkraut and kefir I do stop and think it may all be in vain. That he will unravel the way he wants to and do things in his own time. Thankfully most days we are able to head to the beach where between the vast expanse of sky and sand he is able to be who he is with only the clouds watching and can collect his thoughts on life in the peace, the disarray becoming the debris of yesterday’s tide.

On The Pulse Of A New Year

It is the stuff of urban myth that makes out people with autism love dogs. I bought a puppy on the strength of this hoping he might prove to be a calming influence and a playmate. 20140101-000338.jpgDuring our first month together it has been absolute anarchy. Charlie has developed a bit of a vocal tick, clearing his throat when stress levels are high. Floyd, as Charlie has christened him, antagonizes Charlie in running away with his toys like a thief. Charlie in the full fury of flight behind him screaming and shouting. And the dog barks back. He has already swallowed the lungs from Charlie’s human body model and chewed his prize collection of Mr Men books. 20131231-235909.jpgDarth Floyd loves a battle and sometimes the only contact I can see is between Charlie’s light saber and Floyd’s teeth. Not quite what I had in mind. They scrap and trip each other up but slowly I’m hoping a friendship will out because there are times when I see them sitting next to each other or Charlie sticking up for Floyd when I tell him off for whizzing on the floor again.

Christmas too adds to stress levels. It is a delicate time of year for Charlie. Full of too much fuss, tinsel and people. It all lasts a little too long for him. Mistrustful of the man in the red suit and carolling yet delighting in snowmen, baubles, lights and presents. Christmas dinner saw Charlie refusing to sit with us all, taking his turkey dinner and lone cracker into another room leaving Floyd shagging his blanket in front of the guests in a bid for dominance over something……anything. Poor Uncle Peter. All he wanted was a slice of turkey.

Whilst I can imagine a better position for us to be in I sat content as the year closed,20140101-000724.jpg grateful to be able to stroke Floyd on my lap and hear the soft snore coming from Charlie who had finally given into sleep.  This time last New Year’s Eve we had just arrived home from another hospital stay. A bald-headed, grey faced Charlie was weak, skeletal and couldn’t walk. Last year was the year he recovered and came to terms with the cancer he has had. It was also the year it became more apparent to him that his autism makes him slightly different to many people. I should have a heavy heart and sometimes I do. But looking forward as ever, I sit on the pulse of another new year thinking if he can do that, what can he achieve this coming year? 20140101-001233.jpgI have high hopes. We may live in the shadow of a wrecking ball but sometimes the only defence lies in refusing to let that affect the here and now. A few lines from one of my favourite poems for this time of year says it better than I ever can.

“Here on the pulse of this new day
You may have the grace to look up and out
And say simply
Very simply
With hope
Good morning.”

Maya Angelou “On The Pulse Of Morning”

Where The Wild Things Are

There’s a certain delight in standing on an empty beach in the middle of winter, on a weekday when most people are at work. 20131127-230027.jpg No matter if the landscape is a palette of greys and the water angry and wild. Charlie likes it too. Seeming not to notice too much of what is going on around him, it makes me smile when I say “Charlie look at the sea!”20131127-230042.jpg And he answers “Yep. That’s a cloud portal.” Looking up to where he’s pointing, I see the pale November sun has punched a hole through the carpet of cloud, stretching its weak sunny fingers down to the sea. I smile because he’d already taken a photo in his mind of the beach in all it’s detail as soon as we set foot on the sand, whereas my brain is still lolling around taking it all in. It’s times like these that I feel a very lucky girl.

Charlie and I both have obsessions with wild things of late. Mine is the sea, his is the critters from Sesame Street. 20131127-230052.jpg Down on Blackpool Beach this past week we’ve been combing for pebbles to paint, driftwood to build with, shells to do maths with and sticks to write in the sand. So much to observe. 20131127-230107.jpgThe colours depending on the weather, the atmospheric changes, the moods, the lifted spirits in watching soaring seagulls against the sun. The glorious feeling in running away from a chasing wave or feeling your feet sink into wet sand. In the background, a wild side. The bars spilling the staggering stags and hens out onto the street, the neon cash loan signs over sagging shop fronts, the strip clubs and arcades all lit up under the blinking canopy of the illuminations. 20131127-230214.jpg To the forefront another wild side. A tumulus sea on a stormy day, lashing foam and spray and seeing shapes; choppy triangles, circling waves, flat, grey, glassy surfaces. The sea a symphony for the senses. We’ve been looking at Ran Ortner’s paintings for some inspiration and escapism. Breathtaking. Windswept. Windswept is the shore….to steal some words from Bryan Ferry.

And then back at home in the warm to Charlie’s wild things. Cookie Monster and The Count, he rounds up the rest of the gang from Sesame Street for pretend school and calls the monster register. I say “Do you think you’re ready for school at school Charlie?” And the reply “No no, better I think I should have school at home.” And I don’t blame him.20131127-230124.jpg This intelligent little person who shrinks inside when strangers hear that his words don’t come out right. Today he said to me “Sounds like I need a haircut.” Autism. The verbal equivalent of dyslexia.

Sometimes we end the day with a film. Lying in bed last night watching Cool Hand Luke the irony strikes me that one of the most famous lines from the film is “What we have ourselves here is a failure to communicate.” imageCool Hand Luke in chains. Charlie wearing his invisible chains. Charlie turns to me, every inch as handsome as Paul Newman with an even bigger smile and says “He’s but I think a bit silly eating 50 eggs.” I smile and nod my head. Yes I am a very lucky girl. And like the tide my worries ebb away for a while.

Mope Is My Washpot

As Autumn sets in so too does a sense of normality about our lives. Little things like shopping for food, learning to swim at the local pool and the planning ahead for celebrations and holidays. So comforting and yet at the same time disarmingly frightening. Takes some getting used to.photo (68)

When your child has been ill it seems as though all you do is concentrate on health, like a lighthouse keeper watching and waiting for a storm to show up, making a wreck of all in its wake. It has come as a shock to me that actually Charlie has grown up considerably. I’m still helping him on with his clothes and shoes and yet great changes are happening to him. Our last visit to the hospital for a check up was startling. His consultant was able to examine him without a fuss for the first time. Charlie seemed to enjoy it and even bid him a congenial goodbye. This is a boy who has shouted and swiped his way through all of his treatment. As it goes it was a bit of a moment for me. Either he has decided that they are old friends now or perhaps his system has quieted a little. Even the fly on the wall must have held his breath and fallen to the floor in utter shock. And that’s the thing about Charlie. photo (69)Just when you think you have him pegged he will surprise you. For all that you know about him, there is that which you don’t.

This month we tried hyperbaric oxygen therapy. It started great. He was calm. I put his helmet on when we were at 10 feet below in the diving chamber. He was fine about the popping noise in his ears. Then the oxygen started and he had a panic attack at the sound of it. Apparently he’s a wee bit traumatised by the sound of oxygen hissing out of a pipe after all the times he’s been under. Major bummer. Still you always have to find the funny and we did have a giggle on the drive home about him screaming “Land it! Land it!” when we were still in the tank. He was wearing a space helmet you see.

This fear of an oxygen mask is up there with clowns and is the major reason why he won’t set foot on a plane….or in a circus. Which brings me to his new love. Caravans. He calls them ‘not bad little hotels’ and adores everything about them. Being a homeschooled kid I can’t help but think we may have to own one soon and take advantage of the freedom of having no timetable and the open road. I get the impression he would like to fast forward his childhood. He constantly talks of being a man. He refuses to call any learning school work, preferring to say he is at the office doing his work. He also talks frequently of wanting to go to the girlfriend shop. A magical place where he might find a slim, quiet blonde who he could talk to about Thomas the Tank Engine trains. magic-faraway-treeOn these points he is specific. I haven’t the heart to tell him the only place he is likely to find her is at the top of The Magic Faraway Tree. Some things you have to find out for yourself I guess.

For myself I’m keeping busy in blotting out the flashbacks that lead to reliving sections of time that I’d rather not. Keeping busy in trying to find a new house for us which is proving an arduous task. Only when we have a new perch will I be able to buy Charlie his longed for dog who he has already christened Floyd. moabOnly when we can stand still after the storm in our new pad will I feel my own system calm slightly. And hope that I won’t feel the anticipated fear of flashes of the last time that we lived on our own, when my days were spent desperately explaining to schools and hospitals over and over that my child couldn’t eat or walk very far, and why my terrified nights were spent pathetically trying to stem my child’s pain of his spreading cancer with calpol and warm baths at 2am. In that isolation I had nothing but my intuition. For the moment, mope is my washpot. I do spend a great amount of time dwelling on thoughts like this:-

Survival =
a body in balance x a positive happy disposition x intuition x a sense of humour
____________________________________________________________________
chance

I can understand everything that has happened apart from that ‘chance’. photo (70)I am horrified at it and I am fascinated by it in equal measure. I believe the shrinks call it post traumatic stress. I call it my reality. Unfortunately I’m not too great at talking to strangers about my inner workings and I can’t see I’d find solace in the bottom of a bottle of booze or pills. Jealous am I of people who have a faith but as I just can’t believe in it, the only thing I can see that will wash away the grime is a cocktail of stiff upper lip, a positive mind, music, vegetable juice, Bach’s Flower Rescue Remedy and in the being able to write about it. Imagine being rescued by a flower. We all have our own version of crazy. Cheers.