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.

Here Comes The Son

Last year I really missed summer. Missed the warm salt water waves and volcanic sunsets erupting in the English evening sky.photo (62) Missed the chance to feel balmy breezes playing with my hair and my shoulders and the sun turning my skin golden brown. Missed getting drunk in a field full of strangers, dancing and laughing like a teenager to the music. But most of all I missed my boy. This summer has been special. Granted we haven’t been far but just to see him in the pool in the garden, playing with his cousins, hear his giggles as he gets down to the wah-wah pedal of Steely Dan. Just to see him strong, see him walking and running. To take his hand and walk together on the sand fills me up with glorious technicolour. It is everything I’ve ever wanted. photo (65)The only thing I miss this summer is our innocence. People are never satisfied. That I have him at all should be enough. I find I’m going along just fine, maybe enjoying life and then as happens on rollercoasters, you take a turn, fall fast, scream and gasp for breath at what could actually happen. Then you’re in the house of horrors again.

To save myself from certain insanity I pour as much goodness into Charlie as I can. We walk the naturopathic line. That means mornings I juice, sort his supplements, distill his water, make his green tea for the day and cook the majority of his organic, fresh food from scratch. Afternoons are saved for outings, schooling, trampolining, bike rides. photo (60)Evenings mean a stint in his infra-red sauna (which if nothing else serves to relax him) before his filtered bath, stories by campfire and the resonant light machine. And come the autumn we will be starting hyperbaric oxygen therapy. We avoid wireless as much as we can, harsh chemicals in the house and most importantly……stress and negativity. Well, Charlie does, while I concern myself with the impact fracking could have on him, becoming more and more the activist at all the injustices that need supporting. Breathe. Breathe in the air. It’s not an easy path the naturopathic one. Its time-consuming but I believe in it. We all believe in what resonates with us. And I know it helps me to think that there is something I can do about the health of my kid. Most of all I look at how far he has come. photo (63)He is on his feet, he looks so much healthier, he has masses of hair again and mentally he is starting to emerge from his shell. We go to the bakery, post office, book shop and of course the toy shop together. He doesn’t speak to anyone yet. But he’s out there with me in society. Something amazing happened last week. For the first time I took Charlie to the cinema. We sat on the back row, smuggled in our green tea and homemade brownies and he said to me “Wow, look at the crowd Mum!” meaning the people sat in front of us. He got a real kick out of being part of it. Although he chatted incessantly throughout the film giving me a running narrative of the plot, developed a fascination with the spring back cinema seats and was bowled over by there being a big screen and a little screen from where the film was being projected, it was an absolute success. Just like taking any other six-year-old to the cinema. Because he was a part of things, but it didn’t require much from him. A great step forward.

What astounds me about the life I lead now is the response I get from people. Whilst some are interested and think its great that so much care is taken, there are others that view what I do with suspicion and scorn. Further, there are others that actively ridicule it. I’ve had many a cancer parent poke fun and try to take me to task on why I do this.photo (61) Perhaps, outside of their own beliefs, another person’s point of view doesn’t exist with any merit. When did people stop becoming responsible for their own health? Leave it to the professionals to mop up. Can it not all work together? Is there any harm in trying? Instead I get the hippy jokes and some days the nasty comments do hurt. Some days I think just wake me up when it’s all over. It puts me in mind of Paul Simon singing “who am I to blow against the wind” and occasionally makes me question how I live now. photo (66)But the bottom line is that I do this to make Charlie healthier and stay healthier. And I answer to Charlie and to no one else. What I find startling is how ready people are to accept a more and more toxic society, yet view anything natural as quack. Astonishing. These days more than ever I try to take people as I find them. But unless you’ve walked my line; divorce, autism, bankruptcy, cancer to name a few then you can’t hope to know what path is right for me and mine. Faced with the opportunity of a corporate lifestyle of flash cars, houses and holidays, fat bank balances and tax dodges over a natural more humble life then yes, tree-hugging aside, I would have loved to have been a hippy. Right on I would. But I’m still British for god’s sake! So summer may be ending but my son is sitting gloriously on the horizon.

Shit Happens

I remember so clearly as a kid, living in States, riding my bike around with the other kids, the neighbourhood dogs yapping and scrapping in the streets. Playing dare-devil and riding down Dead Man’s Hill, picking up speed on my bike, letting go of the handlebars, the wind whistling past my ears and making my hair fly out. Raising my hands and smiling face to the clouds, closing my eyes tight with excitement hearing Bruce Springsteen playing somewhere on the sidelines. I remember swimming out further than anyone else in the sea, looking at the heat haze on the shoreline and my parents, little waving dots on the sand. Giggling in the quiet peace that is offshore with the salt water slapping at my face, thinking no sharks will get me. Thrilling. I can recall the memories so well that I can make my stomach flip with adrenalin. That was then. Now there are very grown up circumstances that make my stomach flip. Like re-scans, looking for neuroblastoma in your boy’s little body. And I find I’m not so great at being a dare-devil anymore.

Charlie has had his end of treatment scans last week which show no uptake of neuroblastoma again so the results are great. He is up and walking about without having to use the wheelchair now. Painful and stiff still in walking but trying to run nonetheless. My Braveheart.braveheart His hair continues to amuse me and is now dark, curly and bushy, distinctly starting to resemble a ‘fro. Being the odd little soul that he is, he loved returning to hospital for his scans, this time venturing up to the rooftop playground and down the corridor of Ward 84 which has been his home for the last year. Hobbling with his funny gait chunnering to himself and at whoever was passing, “I’m just minding my own business” in his sing-song voice. Intent on seeing what was happening, looking who was around, looking for some action. For the time has come where he needs to branch away from me a little, to feel who he is around others. I can see that clearly. And so it was that after a little bust up that he and I tend to have from time to time when sharing a confined space, he flounced off down the corridor on his own. His parting words were “Shaddap Mummy, I’m gonna lose you!”. I watched him half smiling, half frowning at the thought that not only did I never expect my son to get cancer but, I never expected my son would tell me to shut up, and neither did I ever think I’d tolerate it. These days I just don’t sweat the small stuff. To my absolute amazement, I saw him sidle up to Nurse Rose and take her hand and carry on walking with her, chatting about I don’t know what, occasionally looking back to check I wasn’t following him. He has never held anyone else’s hand before. My jaw fell open. As so often is the case with Charlie, one mustn’t ever underestimate him.

As a treat this week we visited the Holy Grail (for Charlie)….Thomas Land. Its been on his list of ‘must do experiences’ for years now. photo (28)He knows Thomas Land like the back of his hand. He’s been reading his maps of the place and watching other people experience it on YouTube for a while now and this week his virtual world exploded. Going through the gates I saw that look of astonishment every kid gets when they are over-awed by the magic of something. That in itself makes it all worth it for me. However with hindsight I think Charlie is best being an armchair traveller. It wasn’t long before his fingers were in his ears at the noise and commotion of it all. Valiantly he managed two rides and the shop. Then in the heat and the chaos it all became too much and he shut down. Crying, refusing to eat and drink, shouting he needed a homebreak, shouting he hated me and refusing the wheelchair despite being in pain walking. I’d reached my limit and shouted back like a big kid. The heat, the long drive, the helplessness of it all. shit happensSomedays I just want to divorce myself. It wasn’t my finest moment. Of course in the car, we had a kiss and both said sorry, buckled up and made for home with haste watching the sky turn pink. With the air-conditioning on. And that’s how it is sometimes really. As in life as in love affairs with little blue trains. Shit happens.