Can I Scream Now?

There must be something in the water, or should I say something stirring my waters... But like the wonderful Kelley over at MagnetoBoldToo I have had this horrible feeling of dread for weeks now.

Waiting for the other shoe to drop...

My child is a complex blend of brilliance, blinding beauty and batshit craziness. My child dazzles in his happy moments, and despairs in his darkest depths. My child, who puzzles all of us... even his psych, with his inability to understand the social web of life, whilst being so far advanced of his years in articulation, emotional perception and intellect.

His teachers, whilst wonderful, just don't get what his short life has been like with a brother on the spectrum.

One of them did the unthinkable today, the cardinal comment sin. We talked of the incident last term, when he once again lost the plot. We discussed the "why" theories... the catalyst of this climactic conflict of character that is my youngest son. And then whilst I brought up and spoke of the content of the post I wrote for Autism Awareness Day (though I cheated and called it an article, lol), of how he had been shunted aside in the early years... she brought up the dreaded comparison of "Oh, we all do that, I did with my kids due to the age difference..."

I did not scream. I did not curse. She meant no harm.

But seriously? Don't ever fucking tell me it is the same thing. Don't ever, ever dare to compare the white bread niceties of your life with the charred black toast of ours.

Fuck.

Seriously.

Or as my youngest son would say... Indubitably.

Still waiting for the thud of my left foot shroud to tell me it has hit.

Life is Unfair.

I have a Billy Joel song playing again and again on an endless loop in my head. Only the good die young.

It is a strangely upbeat song for someone sinking into the darkness.

These are the lyrics which echo in my mind after hearing Big Boy's words when I rang him with the news... "Why do the nice people in this world suffer these tragedies and trials, yet the toxic nasty ones go forth without nary a ripple of discomfort?"

We have been friends for over twenty years, I can even pinpoint the date we met. 8/8/1988 - the day I began work at a large investment insurance company. Even through divorce, distance and life's ever changing cycle of demands we have always remained friends. We talk weekly. She and her husband flew in for my 45th bash a few years back. We have shared laughter, tears, anger and sadness. We have had drunken nights, saved kittens under cars, danced at each others wedding.

Friends. The genuine thing.

Today I received a text. In February they diagnosed her with a type of pre-leukaemia with a name so big I could not begin to pronounce it. It was the day she was due to have her large bowel removed after many years of issues. They did not go ahead, obviously. And in the months that have flown by my words of frustration and anger at the lack of action or treatment whilst the medical big wigs pondered this medical dilemma which is my friend, have echoed down the phone line.

"Do you want me to fly in? I am good at kicking medical butt after Wise Woman's fiascos."

"Not yet, I'll tell you if I need you."

"You sure?"

"Yep. For Now. You can be my secret weapon."

"Or your loose cannon, heheheh."

"That too."

Finally they decided to go ahead with her op... but today I received the text.

"It has developed into acute leukaemia. Op off, chemo starting next week."

I have a huge solid knot of fear pitted in my stomach. My gut instinct is sending huge red pulses of angst through out my soul. Those fucking idiots - they had caught it so damn early and yet failed to act. Now I am scared it is too late. I am terrified we will lose her. I am helpless, frustrated and angry.

And if I am feeling this way, how in hell must my gorgeous girl feel?

For God's sake, her girls are only so very young. She is a mother, a wife, a daughter, a sister, a friend. This is not right. It is so very wrong.

Only the good die young, and she is pure goodness to her very core. Please let it not be so this time, please, please, please...

The Legend of Eldred.

Once upon a time there was a very little boy who loved to watch the flashing flares of lightning dance across the gloomy sky in the front of the deck of his home. He was a unique child, one of rare beauty, pure of heart, and full up to the brim with quirkiness. In those early days the booming drumroll of thunder incited much belly laughter to echo over the valley in front. The young one applauded with childish glee at the loud rumbling, and when it paused too long for his little boy patience he would clasp his hands together prayerlike under his chin and call out to the great beyond:

"More Bob The Builder Fireworks please God!"

Sadly his unadulterated pleasure in the magnificence of storms was lost as he grew older, and his cries were no longer of joy but of fear and terror. Until one amazing day he learnt of another wonder, and he began to believe in the magic of the unknown once more. Little by little, bit by bit.

Eldred was a dragon. Not just any old type of dragon mind you, he was a PRINCE of dragons. Large and handsome, his body shone with precious, silvery scales and inside that strong outer shell beat a huge heart that really and truly belonged to one very special boy, a blessed child known as Boy 1. This youngling had a heart so clean and pure and a smile so enchanting that nobody, not anyone at all who knew him, could resist. Certainly not Eldred, for he loved this boy with all his thorny dragon heart. Eldred was Boy 1's self-appointed protector from evil, determined to defend him to the death if ever needed. Which he hoped it wouldn't be because life was pretty good when you had a friend like Boy 1 and a thorny heart filled with mushy friendship love.

Eldred lived in a giant avocado tree in the boy's humungous mountain garden. Well, he actually only slept there sometimes, and on those nights his metallic coat could be seen flashing slivers of light in the reflection from the moonlight. Other evenings he gallivanted happily and worry free around the world, flying and frollicking with a multitude of guardians of the innocent. A posse of princely, prancing dragons, clumsily cloistering around clusters of clouds. Hidden by the puffy pillows of vapour, they happily gambolled, unseen.
Now obviously he would only do this during the times he was assured his Boy 1 was happy and safe and not in need of a dragon bodyguard. Or timidly calling him close, longing for a dragon ear to listen to childhood fears in the dark of a dim night when the shadows loom tall over little boys' beds. On those nights he stayed close, alert to the smallest whimper, waiting to be called, watching silently with a heart full of tenderness. Those nights, as the rain poured from black clouds and thunder shook the mount after lightning split the sky, he sat dripping dragon dropplets down the avocado tree. Huddled as the leaves of green shake in the wind, twisting and turning to reveal streaks of silver, his solid presence defeating the baddest of dreams.

He knew, see, that Boy 1 had been told a secret. Well, he should know for he was the one who did tell this secret. It was a really secret, secret; one that only those who are pure of heart are told. A dragon secret. A secret that made him feel very, very special, and helped him to realise the storms were not solely responsible for the things that scare little boys.
You see Eldred, though royalty, had a few little... shall we say... issues? Whilst he could usually smoothly fly hidden amongst the rolling clouds, sometimes when he was returning to visit his boy (who by the way lived high on top of a magical mountain in amongst a monstrous rainforest), well, sometimes in his haste he would clip a few of the towering trees, or snap a couple of the big, strong, weaving power lines that ran up the side of the peak. And in his frantic rush to return, sometimes, just sometimes, he flapped those massive silver wings so fast that the winds seemed to be about to lift the boy's house from the top of the mountain. Now, a lot of people may see these problems as not so good (mainly grown-ups with no remaining sense of the outer realms of reality), but Boy 1 actually found the flaws to be re-assuring. After all, nobody is perfect, not even dragons of royalty.

This knowledge allowed him to look back to his early days of innocence when a stormy night meant magic and joy, before he learned to fear and cower. The secret meant he knew it was going to be okay, that sometimes a storm wasn't the only reason lights went out. Now when the thunder roared he could hear Eldred's deep growls in response, for we all know the only time a dragon makes a sound is when it can be hidden by the loud thunder. When the lightning flashed it gave him a chance to look searchingly through the glass windows of his house to where the avocado tree stood, hoping to catch the flickering beauty of a reflection from the majestic silver scales. When gales blew around the outer walls of his home, he knew it was probably his dragon flying as fast as he could to get back to his boy. And on those rare times the power goes out? Well, he lights candles, chuckling at the clumsiness of a hasty dragon trying to get back from frollicking before he is too badly missed.

So next time a storm blasts into your lives, look deeply into the darkness for maybe you will catch a glimpse of a dragon, frantically flying past. Returning to his boy.

For Sonia, next time believe in a little of the magic of the mountain.

5am

It is 5am in the morning and already the cicadas are singing as the humidity rises. Obviously, I am awake. The sky is just beginning to lighten, though the clouds cover the morning sky in a veil of mist. Sweat is running down the back of my neck into the light top I sleep in. I would kill for a shower to cool down.

The house itself is quiet. I am hoping the children are asleep. We are in the midst of a blackout that hit just over an hour ago. I am awake. I sleep lightly with a loungeroom light always illuminating from a distance. We are a house of light. Stair light, night light, lounge light. Two TV's emitting a constant low hum. Light to fight off the night demons that have always plagued my oldest. Light to reassure him that all is well.

I am awake as soon as the power dies. I am awake and searching in the dark for my torch even before he screams. I am halfway up the stairs before the terror hits. But not quick enough. Not fast enough to be by his side with light and a soothing hand. Not there soon enough to prevent the rude shock and heart pounding fear that pulls him from deep slumber.

I find all the standby battery lamps and turn them on to chase away the monsters. I sit on the floor of the boys bedroom and murmur platitudes until they appear to drop off to sleep again.

And now I sit surrounded by darkness, the sky gradually lightening, waiting for the new day.

Waiting for the heroes to restart the essential source. Without power, we are also without water. Without water we cannot bath to ready ourselves for a new day. Without electricity we are stalled, waiting.

And so I sit and thank the internet Gods that I still have a little wireless Broadband left over from our travels.

I am awake. And I wait.

Raining Pain.

I wanted to come in and do a light post, I hoped to write something to make a few smile albeit briefly. But this post has to be written, this post is itching to flow from my fingers as freely as the tears flow down my face.

Imagine this. You are a thirteen year old boy driving along familiar streets with your mother and annoying younger brother. He is ten. You are bickering, as siblings do. He is bugging you, bloody pain in the butt he is. Your Mum is telling you both to shut up. Everyday stuff, just like the day before and the day before. It has been raining, you are all a little stir crazy with cabin fever from being stuck inside. It's the school holidays for God's sake, and you are sick of the rain and bored senseless. You reach over to give him a thump on the shoulder for his last smartarse crack...

"Oh my God." Your mother's words have you stopping mid shove and you turn to see a wall of water rushing towards your car. What was once the road in front of you is now a raging torrent of brown, a frothing, angry river which engulfs the car in seconds. Your mother screams as the car slides, you hear your brother join her and someone else yells in fear. It is you. You cannot swim, oh shit, "Mum, I can't swim!"

The car bumps and grinds its way in the swollen, strong, unstoppable current. You try to breath, try to steady your pounding heart and just breath. And you are crying, no longer the tough teenager, now a little boy in your terror.

With a slow groan the car lodges on a tree, it's frantic ride stilled momentarily. You can see someone through the fog of the constant rain, you and Mum and your brother scream "Help, please help." You force down the window and carefully climb onto the roof of the car, your brother scrambles out as your mother climbs precariously to the top too.

The vehicle shudders as the force of the deluge tries to shake it free to continue its death dance. You look into the eyes of your terrified brother, all arguments forgotten. He is crying too, it shocks you, he never cries, he is a tough little nut. The shadowed figure becomes a solid form, he is coming to help. He reaches out to grab you as the flood flow tries to pull him away. You reach forward... and glance at the white face of your sibling beside you. "Take him first - he can't swim." You do not add nor can I, and smile in relief as the burly rescuer grabs your brother and drags him away.

You and your mother grasp the tree with all the strength you can.

A grinding moan shakes the car as the tenous anchor gives. The sudden lurch pulls you from your perch into the torrent. Your mother cries out, then dives forward to reach you and you wrap your arms around her as the flood takes you both into its deadly grasp one last time...

RIP Jordan Rice of Toowoomba, 13 years of age.

Rescuers only had time to save one of the three from this car and he insisted they take his brother even though he also could not swim.  What a loving, courageous young man cruelly stolen from this life with his loving mother also losing her life trying to save him. RIP Donna Rice, 43.

Trying to Make Sense of It

My second son is in crisis. Serious crisis. We knew things were bad for him, but yesterday found out just how bad, and how dangerous his behaviour had become. He has threatened another child, actions we knew nothing about and I am seriously mystified as to WHY nobody told us what was happening. I have expressed as much to the school, how are we to help him or change his behaviour if we are unaware? How does it help anyone if we are not told? If I am only hearing his side, and the teacher is confirming snippets, how on earth are we to know otherwise?

Please do not think I am excusing his actions, we are taking this very seriously but are now scrambling to catch up. And it is extremely serious - he threatened the life of another. He has threatened to take his own life, and we had and were still dealing with this, trying to guide him and give him the emotional tools to get through the darkness. But then it turned outward. Eleven years old and in such a terrifying emotional state as to feel desperate enough to do this, to seriously intimidate another. But I understand why he feels this way, I get why he felt so lost and alone and irrational because he is like me.

The child he threatened has always pushed his buttons (and I am not blaming this boy, everyone has someone they like but butt heads with, and these two have had a love/hate thing for many years), and my child preceived this as him being the cause of the loss of friendships. He grabbed hold and fixated on this boy being the root of all his issues, and to be honest, we thought he was isolating our son. Whilst we understood Boy 2's actions were why (along  with the long standing rivalry) it was occurring, we did wonder why now, when our son so desperately needed his mates, was this child excluding him from everything? Obviously we had no idea how extreme our son's reactions had become. We now understand this boy was trying to protect his mates from the verbal and physical lashing out, the out of control emotional responses. We now understand because finally we were included in the loop, which we had not been. Not in the full sense.

His behaviour started to fall apart when Wise Woman fell ill. I have to wonder if he, being highly intelligent and as his psych says, emotionally articulate way beyond his years, knew deep down as I did that this was leading to the end of her life.

He became possessive and controlling to friends, a trait he and I share but one I have learned in my teenage years to control. He was losing one of the few people he could depend on, someone who loved him unconditionally, and he was scrambling to find solid ground. We are not blessed like a lot of others, we have little family and our really close friends are all interstate. You know, the ones that are like family who will be there for you and your kids no matter what, the ones who don't pull punches and will tell you in no uncertain terms exactly what's what because you have those long, solid years of history that bind.
And so, here he was, dealing with really, really hard stuff and trying to grasp tightly onto something, anything. And by doing so he pushed them away. The more he tried to hold on, the faster they ran. A completely normal reaction for ten and eleven year old boys. And the more alone and desperate he became.

Take a step back and think about it. He is a young boy, they are claiming he may be on the gifted side so there is no doubt he is smart, he constantly deals with a brother on the autism spectrum, he watches his beloved Nanna slipping away from life, and then loses all his friends. How would you feel? And you are an adult remember, not an eleven year old very scared totally lonely grieving little boy.

There are other issues, obviously. His perception of friendship was completely rocked by witnessing the verbal attack by my former friend turned stalker and the emotional repercussions it had on me, the one person he believed to be invincible. Financial pressures as our business struggled through the recession. Puberty hitting his already emotionally volatile older brother. All these emotional triggers building up inside this one small body.

Am I excusing his actions? No. But I am asking for compassion and understanding for whilst others see a child who they do not want their kids around, I see my son falling deeper and deeper into this destructive cycle that could take him from us. He is now the one parents will tell their children to avoid. The one who has no friends for sleepovers or playdates. The one alone. My baby, broken. And I am desperately trying to hold the pieces together whilst we find some a way to help him heal.

Tonight Things are Bleak

They operated last night. Put a huge screw through the top of Wise Woman's left femur to piece it back together. She was in ICU last night and most of today, but they have put her back in the ward late this afternoon.

Five minutes ago they rang. The specialist. Wanted to have the talk. The we don't think it is likely but just in case do you want a do not resuscitate order on? The you know how frail she is at the moment and anything could happen and we don't want to call you in the midst of the night, do we... conversation.

I love her. I love her so much, she is my mum. And I love her enough to let her go if that is the way it has to be, to give her permission to lay down her gauntlet and leave the battle.

But fuck it hurts.

And I am scared.

What do I do when the only person who can make me better is the one I need to let go?

FYBF - In The Wee Hours of The Night

The Rules are here. She says it so much better than I ever could.

I know Flog Yo Blog Friday is meant to be funny and lighthearted but I just don't have any humour inside me at the moment. Life is challenging, but even worse when you add sleep-deprivation into the equation.

I woke with heart pounding, gasping for breath at 1am. Up until now there have been sleep issues, but not as severe as this nightmare induced panic attack in the cold of just past midnight. I dreamt of her. I dreamt she was dying. My thoughts were of her struggling to breathe, each rasping, painful breath slower than the last.

The terrifying thing is that this is not so far from the truth for now Wise Woman has a chest infection and we all know how susceptible the elderly are to pneumonia. Add in her emphysema and we have serious issues.

I have been coping well, running on pure adrenalin as Ro said, but am I dealing with the thought of losing her? I don't know. It is a very real risk right now. She will be 91 on Tuesday, every little health problem erodes her already frail grasp on life, and I know she does not wish to be here with no quality of existance. Death comes to us all and logically I know at her age I should be very grateful to have had her in my life with so much joy in hers for so long.

But humans are not only logical creatures, we are emotional beings and I want to know how on earth I get my head and heart around losing someone who created me. Not in life (as we all know I am adopted), but by moulding my very core to be who I am. How do I ever reconcile myself to letting go to the one person who loves me unconditionally. How do I say goodbye to my mother?

This may not be it. I hope and pray the miracle woman floors the professionals one more time and fights back to quality of life. But it will be one day. And I do not know if I can face it. Ever.

I Am...

tired. So very tired. We have fought the battle, and lost. Not the war, by hell not the war, but yes. The battle. Today I took my mother to hospital. The pain was just too much and I could not find a solution. She reacts to nearly everything, becomes physically ill from most pain medications. And being ill is the worst thing you can do with a fracture. Hospitals scare me for her. They look at her on paper and tend to go *meh*... she's old. They do not see the vital person she is/was until 3 weeks ago. I tell them, make sure they know this 90 year old Wise Woman was doing her Excel spreadsheets, getting her complicated tax return ready for the financial year. I let them know she is the only surviving grandparent my kids have, inform them of the bond she and Boy 1 have. Give them the person not the number.
But still I worry. We have gone to the good hospital, the one an hour's drive, further away than the others. I just hope they get it. I love her so much.

Have I failed her?

December 3: Article #best09

December 3 Article. What's an article that you read that blew you away? That you shared with all your friends. That you Delicious'd and reference throughout the year.

Gwen Bell #best09 Challenge

Think for yourselves and let others enjoy the privilege to do so, too.

 ~Voltaire~

Whose crazy idea was it to do this challenge? Oi, you, Living in the Coloured Rainbow ! I hold you completely responsible for this debacle - making me open up and confront my life when I was quite happily meandering in lighthearted banter-land! Hmph. Bah, humbug, how dare you make me think. Yes, I know I am an adult, and actually older by several years but do note I did not even insinuate wiser. Friends that lead you astray, I don't know. Tsk, tsk.

Day three of challenge. I am finding it difficult to think of an article. The ones which stick in my mind, or that I have heatedly debated with friends, even dragging around copies of to shake in their faces, are the ones I vehemently disagree with.

The one I which invoked my most passionate response is detailed in this blog . It is one which has lingered in the forefront of my mind in recent days as we once again face the vaccination issue. Boy 1's Godmother has just returned from the USA where the second wave of swine flu is in full rampage. Her experiences and descriptions have scared the living crap out of me, and if I was in any other genetic family I would be banging on our doctor's door screaming for the vaccination. But I cannot. The injection here contains mercury. Sure, tiny doses to stabilise the vaccine, but it is there. Lurking like a little time bomb waiting to wreak havoc on my child once again.

I am sure this will raise a very heated debate. But think on this: I love my children, some would even say I am too crazy about them. Don't you think if I could safely give them something to protect them from harm I would? Don't you? How could I ever deny anything to these two?

And how could I ever risk them again?

Irrational

I am sitting here, sobbing my eyes out after watching a comedy: The Boat That Rocked. The boat sank and they were alone. I am alone.

Irrational, I know, but right now in the dark, lonely place I lurk, it is entirely logical to me. I give friendship easily, I love to envelope, nurture, hold, feel. Trust is slower. Trust is deeper. So when not once, but twice it is hurled back into my face as ME betraying them, it hurts. I NEVER, even after someone cuts me to the heart, will betray their trust. It is not the way I work. But I hate it.

I hate the paranoia it creates, I hate the lying, the games, the way I question EVERYTHING in my life. And at this point, I am so scared if what is happening to me is serious, I hate the way the people who were meant to be there for my kids will let them down the way they have let me down, and will shape them.

Oh God, my oldest has come so far, I want him to have the emotional, nuturing, mummy parachute that maybe I will not provide. I am probably being stupid. But know that people who are supposedly friends in my life do not believe that the test results show nothing and yet I throw up blood. But both my children and my husband have witnessed it. Fuck. Maybe I am the internal Jesus. I so wanted it to be an ulcer. I want answers.

Dear God, why do they not see?

I am always the strong one for them - do they not see my Achilles heel? I hate people sometimes.

The Differences.

Yesterday we went to a show generously sponsored by local businesses for special kids, their families and siblings. As we sat in the huge auditorium, the onslaught began. Palms sweating, knees jigging, head swivelling, he glanced all around. "Will it get very dark?" Will it get very loud?" ""Can I have my ear plugs now, all the noise is giving me a headache." It was the usual buzz when you get a large group of children and adults in a space. A constant hum with a few louder squeals, nothing intolerable for the average joe. He is not your average joe. So, ear plugs were handed over, questions were answered, hands were held, nerves were soothed. And then the show started. A magic show, and one well above average in performance. His glorious amber eyes lit up, darting, absorbing all, his hands applauded, his voice rang out in glee, his whole body jumped with excitement. Stress turned to joy. Pure ecstasy.

For the first time I witnessed him speechless after he asked for the magician's autograph in a voice hushed and echoing with reverence.

But those moments in the build up once again pulled away the blinkers from my eyes and glaringly revealed the differences between him and so many others. It is at times like this all my dislike of autism rears up, and I hate what it does to my son. Then I feel ashamed, how can I loathe what is such an integral part of him, and brings so much good as well as bad?

The last words go to him (and me):
"I do not like new experiences, but I feel so stupid afterwards." I often do not like autism, my son, but when I look at what an incredible young man you are becoming, I feel so stupid afterwards.