Life With Autism

I wrote this story prior to my first foray into creative writing. We were required to write a piece up to 3,000 words to submit at the first class. Once I began I could not seem to stop and the words flowed from me in a cathartic outpouring. An edited version was runner-up in 2008 My Child magazine competition. I am posting it here (and it will have been read by many on another site) after reading another blog and realising how impossible it is for many to understand our world. If this opens the eyes of one other human, then it is worth it. For Boy 1, whose strength and belief in the good of all humbles me, and for Boy 2, who is the most compassionate, supportive child, even if he is a smartie pants. I love you both infinity plus 1.

I never dreamt I would grow up to be the sort of woman who cries at the drop of a hat. I always despised women who ride a huge rambling rollercoaster of emotion. Keep it to yourself - exercise a little self-control for God’s sake. Now I have joined this emotional little clique. I read an article this morning, sitting on the toilet of course – where else would I have the time alone to read, and I cried yet again. What was this inspirational topic? Another Hollywood celebrity discussing life with an autistic child. Autism is not selective. People from all walks of life are affected by it. An elite club you do not really know much about until YOU are invited to join. Even now, when a new member is revealed, I cry tears of empathy, grief and relief. I will have another congenial companion on the journey, they will understand. At the same time, my heart breaks for the path I know they will have to tread, the challenges and compromises they will have to consider on a daily basis.
It is quite ironic that emotions erupt from me when the catalyst is a disorder associated with the lack of emotions. Of course, I now know that this impression of autism is incorrect. People on the autism spectrum still have the gamut of feelings but react and reveal them in a different way to the average person. Every child on the spectrum is an individual so the disparities are endless.


How would I describe my son? He is eccentric, unique, pure, complicated and has Asperger Syndrome. He is emotionally challenging, heart warming, and eminently loveable. My prayers are that he is happy and content in his life. I dream he will marry, have kids, follow his dreams, fulfil his potential. He is angelic of face, volcanic of nature but only those who witness him in full meltdown see those masked eruptive depths. Generally, people use the hated phrase: “he doesn’t look autistic, does he?” I wish I knew what autism looks like.


For a parent, those four words: “your child has autism” is paramount to someone telling you: “sorry, you have a terminal disease.” The phrase has a terrifying fatal ring that you did not see coming. Pow, take that. It is ironic that Time magazine nominates autism as the only condition equivalent to cancer in its genetic complexity. Gut reaction: it is a joke, right. Not your child – hey – he talks and is loving! Don’t autistic kids sit in a corner barely emoting let alone being verbal? Must be a mistake, they have to be wrong!


Your whole view on life changes, not in a split second, but gradually, little by little, as the implications of this diagnosis kick in. When a child is born, it enters into a world of parent ambitions and dreams. When that child is diagnosed with a disability, it is the parents who grieve for their lost dreams and ambitions. Disbelief, grief, acceptance, survival: these are the steps. Like a reformed alcoholic following the Alcoholics Anonymous guidelines, we follow our own AA path: autism awareness.


Enter the minefield of lovely, helpful professionals. Sadly, a high number will bombard you with worse case scenarios accompanied by literature to terrify, or offer no assistance whatsoever. Expect you to mine through the fields and find the hidden gold of therapies or support available. A secret society and they must not tell unless the parent unlocks the concealed code. It is only once progressing through the system you learn to become ruthless and track down the rare professional who understands. Don’t get me wrong, we have encountered some amazing specialists along the way, but why have we needed to fight to find them?


As parents, a pervasive, encompassing loneliness engulfs you. Like two shipwreck survivors, you cling to each other, reassure each other, and sometimes loathe each other. Too down beaten even to try to communicate with external connections, friends fall like flies. The child becomes the centre of your focus – the marriage just has to coast along under its own steam. Time is in such short supply to even shower seems an unnecessary waste. The internet and its wealth of knowledge becomes a constant lure. Conversation revolves around droplets of information to be shared. No wonder so many frailer marriages implode under the pressure of a special child. Thank God, ours has not. Thank God, we both follow the same path. Thank God, we still love each other enough.


In the dead of a long, dark night I once wrote:


“What can I say to people to let it out? They say how average, normal he seems but they don’t live it. The fights, struggles, mood swings – his and mine. And the questioning of how much damage I am doing to his brother. How wrong am I getting it? The doubts, anger and frustration of living day to day. The struggle to do normal things like taking a family break. He told me today “I will kill you” and he probably will, somehow, sometime; the heart attack or stroke from the stress, the gun when he is older and angrier… the alcohol I use to feel better... or not to feel at all. So now I sit, unable to sleep; and type and cry.”


This is still my reality though not all the time. My son makes me proud in so many of his actions, methods and beliefs. These are the moments that keep me going, that hold me to the path we have chosen. So many different therapies thrown at you, to pick a direction and stick to it is fraught with uncertainty and doubt. What if it is the wrong choice? What if I am damaging his fragile psyche and another choice would have smoothed his life for him? The consequences could be tragic if we get it wrong. Think Columbine or Arizona Tech. Asperger Syndrome was one of the terms bantered around in connection with the perpetrators of these crimes. The frustration and isolation that erupt into violence, a newsflash revealing a frozen glimpse of a parent’s greatest fear. My greatest fear. How did their mothers feel? The pain and questioning. What did they do wrong? The unbearable guilt and shame, overwhelming loss and grief.


I second guess and doubt my choices already. It is easy to feel that a decent mother would be able to fix things for him. No matter how many times I am told otherwise, I often wonder if I did something to cause this. It is so much harder because I swim against conventional thought. MY child. Don’t they get it? MY child. Nobody on this earth understands him the way I do. Not even his father who acknowledges the truly unique, special link I have with my firstborn. His little brother probably understands him well, but still not that iron, heat forged, binding chain we share. Yet I am probably the toughest with him. I have never subscribed to the school of “poor me, poor him”. I have never allowed the boundaries to differ in relation to both my children. My oldest has to live in the real world, thus he has to learn to cope with the real world. Some mothers think I am harsh. Some mothers think I am obsessive. Some just think I am delusional.


Most education professionals cringe when they see me coming, or if my name is mentioned. One very senior special needs educator said: “you are an overzealous mother who is causing her child undue anxiety and stress by your attitude. He cannot learn and you will scar him with your belief otherwise”. Five of the eight people present believed he was right. I wonder if that man considered how he was scarring me with that comment. Years later his words still taunt me in the sleepless 2am worry sessions. But time has shown how incorrect they were. If only I had the energy to track them all down to flaunt his school report cards.


The tragedy is we are meant to rely upon these “special” educators, these experts. The special needs teachers, the special needs guidance counsellors, the special needs directors in the education department. Those on the front line, the teachers and aides themselves, have allied with us. Former principals have pushed boundaries for us. For this, I am so endlessly grateful. They put their hearts into helping my child, but are often bound by the ridiculous ideas and limits placed by the so-called specialists. I despise some of these authority figures. What was it Mark Twain said? “In the first place God made idiots. This was for practice. Then He made school boards.”


I try not to compare my children. I leave that to the school system. In the household where I grew up, we were treated as individuals. Comparisons were frowned upon. The phrase “why aren’t you more like your sister” was never uttered. I have always told both my children from birth they are unique, special, different. It is heartbreaking to see the way society likes to knock us all into the same monotonous shape. Especially the education department – submit or get out! Comparison is the name of the game. No wonder home schooling is the greatest growing teaching mechanism in the developed nations. I hope both my children survive the educational world with some eccentricities intact. Conform to cope, not to become the round peg. Have the confidence and self-belief to embrace their differences, but still be accepted within mainstream society.


Writing is an ordeal for my son due to his fine motor problems. In this day and age, you would think the system would get it. He will never be comfortable with penmanship, it tires him beyond belief. Most autistic children have low muscle tone, which affects both fine and gross motor skills and it is more difficult because of the pressure he places upon himself to be flawless. Did I mention that these kids are perfectionists? He often will refuse to attempt a task so overwhelming is his fear of failure. I have framed the first Mother’s Day letter he wrote me. My close friends cry when they see it on my wall. I know exactly how hard it had been for him to write this. It is equivalent to another child writing it in blood. The last line in it is “You are very special because you always save me from falling.” When questioned about this line, his reply was “you always save me Mummy, from falling sad, from falling mad, from falling over.” My son. Who believes Mummy will fix anything. I have to live with the knowledge that I will not always be able to save him from falling. I will not always be there when he falls. And so I have to give him the tools to be able to pick himself up, dust himself off, and keep moving. Physically and emotionally. Is it any wonder the pressure pulls me down at times? In my life there is a constant undertow of emotion, ready to drag me under at my first sign of tiring. But if I go down, he goes down, so I swim on.


My child has the typical autistic sensory issues: smell, touch, taste, sound, sight. Like a superhero, these are fine-tuned to hypersensitivity. Makes for fun on any day, is excruciating on bad days. You know he cannot help it, but it is the whinging that wears you. Oh God, the whinging. If you think all kids whinge, then multiply it by 100 and you have life with an autistic child. These children are the eternal pessimists of life. I think Murphy was autistic (you know – the one who wrote “what can go wrong will go wrong”).


It is probably why I joyously revel in my child’s cheekiness. To hear my son use sarcasm or throw a witty comeback makes me glow with pride. ASD children do not have usually this ability. Everything in their world is factual and literal. When his teacher says “good day, no hiccups.” he looks at her in bewilderment. “I didn’t have hiccups today or yesterday or at all last week.” Why would his teacher mention hiccups? He really does not get it. So when I hear him say, “you punch like a girl” or twist a word for a wholly different meaning I know we are slowly winning the battle. The anthem I can hear in the background right now is music to my ears. “My brother’s a pinhead, my brother’s a pinhead.” The chant of a champion. We struggle to teach him the things other kids just seem to know as they get older. I do not want him to lose whom he is, just to make the journey easier throughout life. And to do this he needs skills that others take for granted. If only I could transfer some of the younger brother’s excess to the older brother.


What do autistic children born to demure mothers do? What happens to the children diagnosed with autism whose mothers do not know how to fight? The reserved ones. Do the mothers learn to fight? Do the children become self-sufficient? Or are these the children who fall between the cracks? The system fails them, then Mum does. Future massacre perpetrators. Terrifying. Heartbreaking.


I am by nature a doer, but battle has now become a way of life. I fight my son every day. Eat breakfast. Please eat breakfast. Son, you will run out of time, eat breakfast. JUST SIT THERE AND EAT BREAKFAST! Get dressed. Please, get dressed. Just get dressed. SON GET DRESSED RIGHT NOW OR I AM TAKING YOU TO SCHOOL NAKED! No Mummy is not trying to cause you stress by yelling. Son brush your … Well, you get the idea. Sadly, the biggest campaigns have been waged against those who are meant to be our greatest support. The medical and educational specialists. The burnt out ones, I call them. They look at you as if you are an illiterate idiot, or an obsessive parent in denial. Don’t you understand? Your child has autism, it is not curable! I know the diagnosis. Disbelief and grief were dealt with and then conquered. We have to or the family will remain in an endless limbo. Acceptance and survival are far more complicated, and the impossible is discerning what his reality and potential may be. Exactly who gave these so-called masters a crystal ball? I want one! They are so positive of the outcome for MY child, so definite in their projections. There are so few who understand our plan, who bolster and cheer us on. Give us the positive reinforcement we so crave. Why can’t more of these professionals realise how much we need to hear those few words: “You have made the right choice.” It is not that hard to say!


I do NOT accept the restrictions and the doubt imposed on my child’s abilities. I know what he is capable of. I am aware that many things will not develop with maturity and age if we do not intervene now. Therefore we do. We give him the grounding he needs to become a happy, fulfilled adult. Teach him to use his own judgement to overcome the obstacles. To make the best choices, not the worst.


The internet becomes addictive once you have a child diagnosed with autism. I grasp onto little bits and pieces, ideals and ideas, beliefs and gut instinct. Weave them into our lives. Our path. Our way. Our desire to help him be whoever and whatever he chooses. OUR WAY. The World Wide Web can be your greatest resource or the most insidious tool in the universe. Who was it who said, “A little knowledge is a dangerous thing”? So true. The search for information and ideas can backfire when you stumble upon the horror stories, and the many armchair experts who prophesize doom and gloom for the autistic child. “They can’t” people, rather than “they can!”


I have a signature underneath my username. “Please don’t annoy me, I’m running out of places to hide the bodies…” The original was actually a bit stronger than this, but I adapted it to be a little more politically correct. Just to warn some people I meet on the internet highway that I am a lioness protecting her cub, the warrior queen using my wit to take down any enemies.


It is terribly amusing that I am writing all this. Baring my soul, ripping off the scab from my heart. I try not to ramble on too much about him. People’s eyes glaze when I am spilling too much. Therefore, I do not. It just seethes in the pit of my stomach until I get through it, or until I purge it all on the internet to my close coven of friends facing the same battles. Yes, we do actually call ourselves a coven or sometimes a clique. A clique where nobody ever has to fight for membership. A group of emotionally turmoiled mothers grasping hands, baring souls, trying to bandaid the wound. Now I sit, and again I cry. This time with gratitude that these special women get it. I can stop fighting and breathe. Just for a moment.

Waiting For The Dragons

This piece was my 2009 entry to the Australian Woman's Weekly short story competition. It is close to my heart after prematurely losing three people I cared greatly about to the dreaded cancer. This is not counting my Dad who lost his battle at the age of eighty. I did not win, obviously.
For Boy 1, who truly believes in the magic of dragons.

I 

I can hear the thwoop, thwoop as they swoop above me like a colony of gigantic bats, so near I can see the network of veins in their thin-skinned wings. Lower and lower they fly until the surrounding air is in gusty turmoil. The wind wildly whips the hair across my face as the dress billows around legs. I have never felt so exhilarated, so alive. I could scream with sheer joy. The largest of the dragons turns, glides, and dives downwards, closer and closer, a shimmering missile, gleaming golden eyes fixed upon me. I cannot contain it any more, exuberant laughter bursts forth, restrained no longer. The dragon bares it’s large, sharp, glistening teeth in response. Closer, closer…

I awaken drenched in quickly cooling perspiration from a night sweat and my heart pounding in excitement, or maybe fear. Beside me Jason stirs, one hand outstretched like a heat-seeking missile constantly pursuing bodily contact. What will he do when I am gone? Whose warm body will replace mine when this insidious disease finally claims my last breath? Will his hand find only an icy void where I once lay? Will he lie in loneliness, morosely recalling midnight conversations from the dreamy days when we thought we were invincible?


“Mummy? Mummy?” My mournful introspections abruptly shatter with a child’s frantic cries. Lurching to my feet the room spins, and I furtively swallow the rising taste of bile, my bitter, tangy, constant companion.


Jason stirs, and begins to move with sleepwalking slowness, sluggishly throwing back bedcovers.


“Kath, get back into bed, I’ll go to him.” An overwhelming surge of frustration engulfs me. There is no excuse for this snail-crawl pace. No physical infirmities limit his motion, though he is sick at heart.


“Go back to sleep, it’s me he wants. Please, just leave me be to do this as long as I can!” Temper quickens movement in my painful muscles as irrational emotions help win the physical battle to make my legs work. With martyred sigh, Jason reclines into the pillows, resigned in the face of such belligerence. I angrily manage a reasonable imitation of a confident walk along the dim hallway to my only child’s room.


I enter to see him sobbing and all resentment vanishes, his upturned, tear-stained face the only part of him visible from under the bedcover tent. The night terrors he had left behind at four have resurfaced with a vengeance at six. He fights his faceless fears nightly just as his mother wages daily battles for life.


“Shh, sweetheart, Mummy’s here.” I stumble awkwardly to his bed, tripping over furry toys and setting off manic announcements to the lowly lit room, “Tiggers love to bounce!” It is a wonder any semblance of slumber lingers under his distress. “Baby, Mummy is here, quiet now, Mummy’s here.” Murmuring constant reassurances, I carefully climb into the small timber bed, sliding the diminutive bundle of my son across to give space to lie. We spoon, his tiny back pressed against my chest as it has been since birth. Only now, instead of being cushioned against my nurturing breasts he is cradled against a myriad of scars. With the innocence of a child, he cannot see the changes. He only knows Mummy is here and he is safe. A contented sigh escapes his lips as he slips back into dreamtime, devout in his conviction Mummy will slay any scary monsters. Other than the broken sobbing, my child has not spoken a word since I entered the room. I ease my aching frame into a more comfortable position and prepare for a long, sleepless night. Discomfort lessened by the joy of gazing at my baby’s peaceful face, a pleasure I am terrified I will lose too soon. I kiss his slightly clammy brow, and cradle him closer, savouring his warmth and inhaling the unique scent that is Thomas.


The glare of the morning sun awakens me to another day. My son sleeps, arms splayed and legs tangled in tyrannosaurus-tinted linen. I stretch my stiffened limbs, and painstakingly move to sit on the edge of the rumpled single bed, taking care not to disturb my miniature bedmate.


“Hey, you.” My husband stands in the doorway ready to face his working life in suit and tie, unrecognisable from the weekend Jase of faded rock tee shirts, stubble and old, worn trackies. I drink in his image, pausing to imprint it into my subconscious so it is there to recall during my long day. He waits patiently for a response as my eyes devour him.


“Hey, you.” This is our secret language from early university days when all was about keeping it cool and casual. When we remained totally oblivious to the fact we were never destined to be a disposable affair. “Hey you”, translates from “I love you” to “Are we okay?” In the breathtaking minutes after Thomas’s rapid arrival into the world, it quietly voiced our avalanche of raw emotion. Now it is a phrase to cover all we cannot speak of, all we dread. A code to strengthen us when this dreadful disease begins to erode our love as it eats away at my flesh.


“So?” He flashes the boyish grin that captured my heart the very first day. Sometimes I feel time has stood still for him, he is my own Dorian Gray, and I am the portrait in the attic. “Are you sure you’ll be okay?”


“Fine. I’m a big girl now you know.” I manage a crooked smile to support my words. The great pretender as I am not all right, I do not think I will ever be again. The appointments terrify me and all I want is for him to be by my side to hold my hand and reassure me all is fine. The reality is this cannot be as our savings pour into the bottomless pit of paying for pointless treatment. Futilely we attempt to slow the ticking clock, trying to decelerate the progress of this illness and buy a little time.


The bed stirs beside me, sheets kicked aside as my reason for prolonging life springs into wakefulness.


“Mummy!”


“Morning monster, sleep well?”


“Mummy, I dreamt about the dragons again. Mummy, do you want to know about my dream? Mummy, Eldred is watching us you know. He was in my dream again.” His amber eyes light up and my heart clutches at his obvious excitement. With a pang, I recognise the same exhilaration of my own early hours. I can only hope his reality is not the disappointed awakening mine is.


“Was he big and shiny with teeth all sharp?”


“No, silly Mummy. Eldred is a good dragon, he isn’t scary at all.”


“I’m glad pumpkin, we need someone nice to look out for us.” Pulling him into my arms, I tickle the small spot on his stomach where I once blew wet, sloppy, baby raspberries. He erupts into childish laughter as Jason comes over to squat bedside and join in the revelry.


“What about Dad, don’t I watch out for you guys?” An undertone of seriousness colours his words, even though the tenor is jovial. It is hard for him to feel so helpless in the face of my suffering.


“Daddy!” I watch my son launch into his father’s arms. Focused on me he had not noticed his father in the doorway, now he is intent on making the most of Daddy’s presence. Two dark, curly heads bob in unison as they tussle.


“Careful Thomas, Daddy has his good work clothes on.”


“Its fine Kathy, I can always change if I need.” Chastened, I stand back and watch the manly display as they wrestle on the carpet. Once upon a time, they would have pulled me in to join them, but now caution taints every physical connection. I loathe my frailty; abhor the betrayal of my body, the cloud of pain shadowing every movement I make. I hate all that sickness has taken from me. Each joyous squeal, every giggle from both young and old slices through my heart, I have lost my laughter.


“Okay soldier, off me. Time for breakfast, it’s a school day.”


“Awww, Dad.”


“Nope, don’t awww Dad me. Time to move it.”


I stand slowly, “Okay, who wants Weet Bix and who wants toast?” My stomach protests at the mention of food.


“I’ll do it.” Jason tries to rescue me again. I stop him with a look, he knows this is not an argument he can win. The time will come soon enough when his kingdom will expand to usurp my kitchen realm, but not quite yet. I gather my subjects, and lead them as agilely as I can into my domestic domain.

II

The sterile waiting room always invokes an emotional response. I often wonder if they have deliberately created a cold, barren space to combat the intense feelings generated in the clinic. I am alone and insignificant sitting here in my padded chair, flicking idly through a fashion magazine and pretending not to watch the other patents enter and exit. I will never understand the rationale behind keeping magazines full of women with complete, perfect bodies at a place where all feel scarred and damaged. Intermittent shattered sobbing of despair breaks the sterile silence. We do not risk looking at each other in this limbo land.


“Mrs Williams?” My turn in the torture chamber comes too quickly.


“Yes.”


The sombre receptionist scowls my way, and growls “Come through.” I yearn to add, “Said the spider to the fly” but do not think she would appreciate my neurotically obscure attempt at wit, so I simply smile and slide past her to the doorway. I long for Jason with his satirical humour.


The doctor stands with his back to me, intently perusing the printouts of my future. Millions of razor blades twirl inside my knotted stomach as I attempt to stop the compulsive twitching of my fingers. A nervous giggle breaks from my lips. He looks up and I have become a fly trapped in his piercing spider glare.


“Sorry, flash back to a childhood game. Church steeple, open doors, here are the people?” I hold up my entwined digits with their ragged, raw nails and wiggle them as I babble. I hope he is jaded enough to be blasé about nonsensical ramblings from patients. I watch as his thin, dry lips begin to move rapidly spilling forth the unwanted medical results. He frowns over black-rimmed spectacles.


“Jason not with you? Right, well then. I guess we’d better get on with it. I have the results of…”


Before this nightmare, I had always daydreamt about medical specialists who bore a startling resemblance to George Clooney. Unfortunately, mine is the image of Peter Sellers. In the early days, Jase and I regularly joked about yearning for ER’s strong, competent Dr Doug Ross and the poetic justice of landing Doctor Strangelove. Not now. Now I pin my hopes on the good doctor and his cache of medical tricks. All I need is just a little longer, no matter that the days are painful and tiring. Time for my child to have the mother who adores him and to create the memories he will hold warm in his heart to get him through when things are tough. The resurrected morning image of my two men tussling and tumbling happily together on the floor makes me smile. I am wrenched back into stark reality by one word. Palliative.


“I’m sorry, what?” His unusually sympathetic gaze scares me.


“Sadly Katherine, the test results leave no doubt. The cancer has metastasised beyond the original site into your bones, the lining of your stomach and excessively into the liver. I don't feel at this point you can tolerate any further treatment, nor would it be of significant benefit to you. I will be referring you to palliative care to manage the pain. I know this is not news you were ready to hear. I am so very sorry.”


I cannot hear, I cannot breathe. Encased in a thick, solid block of ice I sit, frozen in disbelief as my executioner talks on. I need to leave; I have to get up and get out of here now. It is my turn to prattle as I agitatedly gather up my cumbersome bag, stand and make excuses. I must escape. This appointment never happened.


“Katherine? Would you like a glass of cold water? Katherine? Can I get you something?” He moves as if to restrain me, or maybe he is merely trying to reassure but I flinch from his touch. I cannot bear for him to lay a hand on me. You want to get me something, then get me my life back.


“I’m sorry, but I really have to go. I am late to pick up Thomas. I have to pick up Thomas. I have to go now, yes right now.” The room is shrinking, and no matter how fast I inhale, I cannot get enough oxygen into my lungs. I trip over the chair leg in my haste, as a startled Doctor Bellington follows in my wake, stuttering questions to quell my flight. A mass of mouths form surprised circles as I burst into the crowded waiting room.


Escaping into the bright sunshine, I stumble to the carpark entrance and double over gasping for air. I want to vomit.

III

I can feel the thwoop, thwoop as his majestic wings sweep upwards and downwards in giant brush strokes. The constant, rapid beat of his heart is drumming against my clenched calves and I tighten my hold on his silver, scaly neck, gripping for dear life. My burnished bronze hair billows out behind me, thick and lustrous blowing blissfully in the turmoil of rushing air surrounding us. We are flying. The night lights below glimmer like a million tiny candles, guiding our way. A myriad of diamonds reflect from my dragon’s skin, whilst shimmering above us, the stars illuminate the skies. I am free and the world is mine to go where I will, wherever I choose. We fly over small continents in quickly passing moments. I am content. I am happy.


“Muuummy!” I am snatched rudely into wakefulness on some level partially aware this yell holds no terror, no desperation. It is a scream of triumph, pure joy. Ineffectively I attempt to throw back the anchored bedcovers, but before I can summon the strength Thomas explodes into the room. He leaps into the icy void where Jason once lay, jiggling and bouncing our bed. His energy exhausts me.


“Mummy, mummy. I flew! I flew on my dragon!” The whole room seems to quiver with his excitement. He pauses only to catch breath.


“Mummy, it was Eldred, he jumped into my dream! Told you he is magic. He took me lots and lots of places.” He flashes the gap tooth smile I love so much followed quickly by a fleeting, pensive frown. Something is on his mind. We wiggle giggling down into the covers, hiding from the world in the dead of night. Billowing sheets a cave, the bedside light a flickering campfire. This is our time for exchanging confidences; it is not as difficult to talk about the hard things in the solitude of early morning. However, tonight our tales are happily full of daring dragons and glittering jewels.


“My dragon is magic too, sweetie. Her name is Hildegard and she has shining jewels all over her humungous body. She’s really big, and so strong.” My subconscious wandering has left me with a buoyant lingering sense of freedom.


“Eldred is more magic, Mummy. He doesn’t need girly jewels. He flies real fast. Like a rocket.” Thomas pauses, and chews on his bottom lip the way he always has when lost in thought. “Mummy?”


“Yes, baby.”


“Do you really believe in Eldred?” His earnest, tawny eyes hold me captive, pinned.


“I believe there are a lot of things we don’t know for sure in this world, Thomas.” Pupils widen in wonder as he considers the possibilities. He pensively worries his pouting lower lip again.


“Mummy. I know some secrets. Dragon secrets. Real magic.” This last declaration is delivered in hushed, reverent tones. He pauses, and sighs deeply before continuing with a whisper.


“Mummy. Eldred is so magic he can fix up the bad bugs inside you. He told me he could.”


“Oh baby.” My heart breaks into a million pieces in the face of my child’s steadfast belief in miracles. My faith had been lost from the moment the term palliative was introduced. “It’s not that easy darling; the doctors have tried all sorts of magic to make Mummy feel better. Sometimes even magic cannot help.” He stubbornly shakes his head.


“No. Dragon’s save people. That’s what dragons do. He could fly you to heaven, Mummy. He would be very careful. Then God could fix you.”


“What are you two up to under there?” Sheets drawn back, we sit blinking owlishly in the glare of the lamp. My husband leans in the doorway; dark circles rim tired brown eyes, curly hair matted from fingers running endlessly through, a face grey with exhaustion. No more is he my Dorian Gray. I know he has been sitting in the darkened, cold kitchen staring sightlessly into the night. My poor, poor love. I smile and catch his eye before I speak.


“Hey you.” He tries to smile at our private code. What does he see now? Is it as I was when all was well or do my ailing looks pierce his heart? I know what the mirror shows, I have grown ugly in my illness. I avoid reflections but sometimes when walking past I catch an unguarded glimpse of who I have become. Then I cry.


“Hey you. Shouldn’t you two be sleeping?”


“Sleep? Bah, sleep is very overrated. We have been dragon adventuring!”


“Eldred is going to fly off with Mummy, Daddy.”


“Oh, so a dragon is my competition. I think I need to have a talk to this Eldred.”


“No silly, Eldred is taking Mummy to heaven.” I see the jerk of Jason’s head as this unexpected missile hits home. Our concerned, solemn gazes link across the room.


“Sweetie, Mummy is still here. I’m not flying off with anyone just yet.” I do not want to crush all his dreams; he will need an element of magic in his life when I am gone.


“Room for Daddy in this hideout?” Carefully, trying not to jostle, Jason climbs into the queen size bed beside Thomas. Our son provides the buffer to be not too close. It has been an eon since he could bring himself to hold me. All we seemed to do in those first weeks after my death sentence was hold each other, now it is as if he is scared I will break if he touches me. I am scared I will break if he does not.


As my anger has abated, his has grown.


“Daddy?”


“Yeah matey.”


“Don’t you love Mummy anymore?”


Jason’s face loses the little colour it had. Thomas is a perceptive little man, he doesn’t miss much. He is closely watching his father’s reaction.


“Of course I love Mummy, why on earth would you think I don’t?” Jason is drowning in emotional turmoil. I cannot save him, I cannot save myself.


“You don’t kiss Mummy anymore Daddy. Are you mad at her?” Our eyes meet across the top of our son’s head. I can read my husband’s thoughts as clearly as if they were my own. He is mad at me, he is furious at the whole world. Rage consumes him. We desperately need to talk, but not with little ears listening.


Besides, this night waking time is reserved for fun.


“Oi, you two, no serious talks allowed in the cave. Now whose coming back under for some dragon training discussions? My Hildegard has a huge flatulence problem I need to rectify.”


“What’s fatnuence, Mummy?”


“Mummy means farts, kiddo. Who is Hildegard?”


“Mummy’s dragon. That’s gross Mummy! “


“Come on you two delicate little petals, I need some advice. Surely you blokes would be the farting experts!” Giggles and guffaws bounce around amid loud, protesting denials, and the darkness of our lives is lifted a little. Time enough for reality in the harsh light of day.

IV

My heart is breaking as I watch him struggle, how hard it is for him, how sad for all of us. We are talking once more, there is much to be said and so little time. I am content in the knowledge my husband will get through when I am gone, now we both see life will go on. I have told him I hope he will love again. He denies he could. He does not see as I do that great love begets great love.


Some days I lie around in an opiate-induced trance, unable to move. As the weeks pass, these listless, lifeless periods are becoming more and more frequent. The dose of morphine pumping into my body to hold back the pain is getting stronger and stronger. I am at the point where peace and the desire to be free of pain are enticing me away from life. I have no strength left, I crave serenity. It hurts even to breathe on the bad days.


My son lies with me most evenings. We spoon, his robust young body cradled against my frail, skeletal frame. His only desire is to be close to me, but I insist on his daily routine. I tell him I need him to go out into the world, as I cannot. He brings me back precious tiny tokens, snippets of normalcy. My bedroom is overflowing with fragrant blossoms, remarkable rocks and vibrant, colourful drawings of dragons; always of dragons. We talk, and though he knows I cannot return once I leave, he does not cease insisting the dragons will help to ease my way wherever. My child, my glorious child. Jason assures me he will keep me alive within my boy’s mind and heart, but I know memories fade. All I hope and pray is that when he thinks of me as the years pass, he will still feel the warm glow of my love surrounding him. My son, my Thomas, how can I bear the agony of leaving you? It surpasses the worst I have endured on this journey, and yet I cannot fight on any longer. Be strong and brave, my beautiful boy. Remember, Mummy loves you.

V

I can hear the thwoop, thwoop as he comes closer and closer, spiralling lower and lower. He is so beautiful, a myriad of jewel-like colours cover his majestic wings and body. This time he is coming, there is no stopping him. He is coming for me. Tears run in rivers, melding with sweat on my face. I can feel the moisture flowing, seeping into the cracks of my bloodied, split lips. A surge of turbulent air from flailing wings cools my fever-ridden torso, pushing adrenalin into dehydrated veins, pumping pulsating shocks of life into my fragile body. The beating of his wings grows louder and louder, thump, thump, until my whole being pulsates with his rhythm of life. The closer he comes; the further the beat slows. As my final, deep sigh of bliss leaves my lips, he sweeps me gently into his strong yet tender grasp. A beloved little voice murmurs sweetly into the ear of my earthly shell: “Mummy, Mummy, I was right. The dragon saved you.” It is the last I hear, his precious, small voice fading into the distance as the agony recedes and I am swept, cradled safely within the dragon’s embrace, into the brilliance of the light.



Dad’s Boy

This short story was written about my childhood experiences with my Father for the ABC National Rural Short Story Competition. Of course, the year I decide to enter was the year they decided to terminate the competition due to a lack of funding. It has since been published in our small rural newspaper.

My shiny black leather shoes are resting on the edge of the truck’s cold bench seat. I cautiously stretch my small legs in an attempt to drop an ankle over the rim to sit like a big girl. Not a chance. I am wearing my sensible lace-ups, double bows lovingly tied by Mum in near darkness. I don’t want to scuff the glossy shoe surface as I can see myself in their reflection. At almost four years old, I’m off to help Dad on the freezing morning milk run. We sit silently, and our rapid breathing produces heated hazes of damp vapour condensing in the early morn clouding the interior of the windscreen. Dad wipes it with crumpled newspaper; there is no demister in the old girl as he fondly calls the lorry.

Dad’s boy they call me, though I am the second of his two daughters. The tomboy shadow persistently tagging along behind as my weather-beaten, craggy-faced giant of a Dad strides about our backyard feeding chooks, tilling the vege patch, and chucking papers into the ancient incinerator until billowing black belches of smoke mask everything around us. His large calloused hand holds my soft plump fingers tight. Dad’s boy is safe from harm; she’s with her Dad. I am his diminutive companion for all tasks, though my big sister always tells him I’m a nuisance and annoying.

After weeks of whining, begging and beseeching, finally I am deemed old enough to accompany my former cow-cocky father on the four am milk run. My sister, who is eight, has outgrown these adventures. In fact, she never really, truly enjoyed the daring moonlit escapades. She is such a girl.

Mum woke me up when the stars were still shining bright, winking at me. Now, I am bundled so deep in thick, warm layers of clothes all I could manage was a penguin shuffle to the truck. Dad hoisted me like a plump package into the passenger seat, and now I sit entranced by my reflection in my black shiny shoes and the steam flowing from my mouth with every breath.

“All set petal? Gunna give your old Dad a hand with the milk cans?” In the darkness his shiny eyes twinkle as he turns the key. The engine splutters once, twice, a third time grumbling at this cold early morning start, until at last she catches with a shake and a rattle. We are off, waking the slumbering neighbours with a clatter and a clank as we roll down the bitumen road through the sleeping country town, before heading into the gloomy fog of the rural farming area. Cluttered houses on the quarter acre block give way to barbwire fences and hazy shadows of dairy cows as the dawn sun slowly crawls its way above the horizon, darkness still holding most of the land in its gloomy embrace. We turn up dusty tracks, rattle over rusty metal cattle grids, and turn into ramshackle timber sheds where the daybreak milk rumbles through monstrous milking machines as they sigh and groan with lives of their own. Giant metallic robots rhythmically sucking at the udders of placid caramel coloured Jerseys whose long-lashed chocolate brown eyes blink slowly, sleepily at me through the morning mist.

“See you got yourself an offsider today. Looks a bit on the scrawny side to be of any use!” A decrepit moth-eaten hat shades the farmer’s gnarled face whilst the sun weakly struggles to break the fog’s hold over the frost-covered paddocks. The stench from his hand-rolled cigarette wafts past as I smother a cough. Dad’s boy is tough and the smoke is weak compared to the bilious fumes from our backyard burnings.

“She’s stronger than she looks. She’ll be right.” Dad winks at me as the old man walks away. His laconic voice echoes back through the stillness of first light.

“Wanna cuppa? Just brewed fresh.”

“Nah, better keep moving. Don’t want the offsider to fall asleep on me.” Dad smiles at me to take the sting from his words, his white teeth glisten brightly in the new day’s sunshine. He heads to where the tall silver cans sit sealed, waiting, and hoists one effortlessly onto his broad shoulders, “Petal, stand by the back of the lorry you’ll have to help me haul it on.” I stand to attention, Dad’s boy ready for service. He lumbers to the rear of the old girl, drops the can to stand for a minute on the ground as a solitary sentinel. Opens the flaps, ties them back with frayed rope.

“Ready?” He looks at me, nods curtly and grips the hard metal lid. I squat, grab the cold clammy bottom ready to help with all my childhood strength. Effortlessly the can flies upwards into the back. Who would have thought those big tin things full up of fresh milk would be so light? I jump for joy as Dad goes to get the next one and the next. I am Dad’s boy, and I am telling my sister she is a nuisance and a Nancy girl.

We churn off down the dusty road towards our next stop. My black lace-up shoes are covered in mud, scuffed and dull. I don’t care. I am Dad’s boy.