Sometimes all you need is friends. Last night a casual catch up was planned with some friends. Big Boy was away in the land of dark skies, Boy 1 had invited one of his besties for a sleepover, Boy 2 is great mates with the younger son of three of my friend who were all dropping over for a while.
Me, being the great culinary expert of the area, had previously decided to go the easy route and order a mass of seafood from the local fish and chip shop.
School pick up... Boy 2 asks if another mate can come for a sleepover if his Dad says yes. Cool. The more the merrier.
Other friends land in around 5ish, the healer of the Mount (my wonderful friend) mentions another gorgeous girl had rung and wanted to catch up. We then spent an hilarious hour or so trying to track her down as she ferried kids to blue-light discos and the such (cannot wait until she hears those messages).
By the time the fish and chips and other bits and bobs were on the table, there were EIGHT boys ranging from little to oh my God how did you grow so towering tall all of a sudden high. And three laughing Mummas.
Having good friends around is the best medicine and heals so much of the angst. This has been a hard week. To have time with these two beautiful inside and out ladies was exactly the remedy needed.
Sometimes it is the unexpected get togethers that are the best!
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."
"Yep. For Now. You can be my secret weapon."
"Or your loose cannon, heheheh."
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...
One of my favourite bloggers, Apples and Autobots has a son on the autism spectrum. When I read of Bot I am taken back to the early years of Boy 1, for the similarities are endless. You NEED to read this post. This amazing, eloquent, articulate, wonderful blogger has explained beautifully one of the major issues we as Mums of special kids on the spectrum face. Sensory meltdowns, and the PUBLIC'S reaction to them.
And I am going to add one of my own stories, well, experience not a story actually.
Boy 1 was around five or six. We too were at a shopping centre, but one with open spaces and discount stores, plenty of room and little crowds. Still, if a bad day, not a feasible excursion. The day began as a good one.
We had perused the stores for a little while, and choosing my battles, we were in the last one. Start happy, end happy, at least that was the plan.
Near the front door of the department store was a clearance table full of Harry Potter merchandise. The three of us, MM, Boy 1 and Boy 2 were all surrounding this table picking what we wanted being the Harry Potter mad family.
The automatic doors began to open as someone else entered. It was in this split second I realised Boy 1 was standing in the tiny gap between table, front window and side wall. The doors had safety mechanisms to stop them closing on someone, not to stop them opening and crushing anyone between the door and the wall as they opened.
I screamed for him to get out of there NOW in the second he had to move as visions of him being crushed before my eyes danced in my head. And when I say screamed I mean SCREAMED!
It would hav scared any child, but to a child with sensory issues it was terrifying. Move he did. He ran screaming past me, past the checkouts into the store.
Crying at the top of his lungs "Keep her away from me, she is going to kill me, she is going to kill me."
You can imagine the reaction of the staff and the shoppers, all I wanted to do was calm him and all they wanted to do was protect him from the one person who could calm him.
It ended. I kept my calm as inside I disintegrated emotionally, explained he was on the spectrum, explained to my distraught son why I had yelled when Mummy really only yells at the times she is losing the plot. We went home. Eight years on I can still feel that solid knot of fear and sadness, of dismay and anger. It wasn't that these people laughed when it was all cleared, it was the way they then looked at my child. Flawed, disabled, broken. Never in my eyes, but that is certainly what shone through theirs. And right at that point the other emotion I remember is hate. I hated how they judged him by a label and by one incident, I loathed the path ahead when so many would do the same again and again. I wanted to SCREAM at them "Do you know him, truly know what a really special boy he is? Yes, he is facing challenges, but can your kids soothe any distressed animal on this planet by merely speaking to them for a minute? Does your child tell you they love you every 5 minutes and treat you as if their world orbits around you? Do they captivate the hearts of those who are supposed to be calloused professionals, yet bask in the brilliance of his smile and the sharpness of his mind? DO THEY?"
Of course I did not. I merely thanked them for their patience and walked away.
So, this is my weekend grateful I am grateful for people like Apples and Autobots who explain far more gracefully than I ever could. I am grateful for so many people who take the time to share, who let their open wounds bleed to educate and advocate, and for the wonderful kids like Bot, and Boy 1 and so many others who make this world an incredible place to be.
And I am so truly grateful for both my sons, my oldest with his incredible goodness, heart and spirit, my youngest with his compassion, support and brilliance.
This is a blog hop, though you may be now feeling like it is a lecture. Go, read some lightness and fun, laugh, smile, live. Just keep in mind the next little boy or girl you see having a bad moment may not be having a tantrum because mummy didn't buy what he/she wanted, his/her whole world may be spiralling like a kaliedescope of out of control, overwhelming images, noises and sensations inside that little boy/girl brain. So instead of judging or laughing, maybe go over and ask how you can help a mother who is doing her very best to keep it all together?
My Aunt passed away last night. Again my cousin had the job of ringing me distraught, her words "Well it's official, I am an orphan" were not necessary as the sound of her sobbing made the reason for the call very clear.
May 2010 - Uncle Darleigh's Funeral
My Aunt and Uncle had played a very strong role in my life. In the past I wrote of my Uncle's fight with cancer, and then our loss of this wonderful man. But I do not think I have written of them. i can only do so briefly now, for the pain is fresh and raw.
I was Dad's Boy. The tomboy substitute for a son. As such I accompanied Dad on lots of blokey adventures, a lot of them at my Aunt and Uncle's farm. I grew up spending many days rambling and running around like a wild child over fields and in forests at their place. Wise Woman had dragged my Grumblebum Dad off the land into town when they married, and my Aunty Nancy and Uncle Darleigh took over the huge acreage atop the brother in the middle mountain. A dairy farmer's life was not easy, and whilst my Uncle worked the incredibly long hours, my Aunt taught at the local primary school. It was my Aunt's job which paid for so much over the years; the new irrigation system, the automation of the dairy, the enclosed tractor to help my cousin with his allergies.
She was the strength behind the man. She was an intelligent, articulate, straight-talking woman. When my sister died she refused to let us have Christmas alone and every year for quite a few she organised a wonderful extended family day. She danced at my wedding, cried at my father's funeral, rejoiced in the birth of my boys.When my oldest was diagnosed on the spectrum she was there supporting us with every ounce of her teacher and loving aunt self. So big-hearted was this wonderful lady, not only did she raise my two adopted cousins, but she also took on my other Aunt's two boys when their mother passed away from cancer. Family. It was always all about family. Be it by blood or marriage or love, we were all so very important to her and she to us.
Now I wait for my cousin to ring me with details so I can once again organise to go home for a farewell. Aunty Nancy, I will miss you more than words can say.
Another Wise Woman has left this realm, she will be sorely missed by all who knew her.
I write. I love to write. I have loved to write since I was a child.
Now both my children write. Both my children write well.
Now, why would this be surprising, you ask? Well, for my oldest writing has not come easily. The incredible imagination and inspiration was always there but getting those words out in a harmonious fashion has been a long haul.
His speech therapy from age four consisted of lots of rhyming and poetry. And when I say lots, I mean one or two or three or even five rhymes a day. Created by us (as in he and I, but mainly he because it was no use me doing it, no help to him), until he was capable of creating by him. His therapist compared it to repairing a train track to comprehension and articulation, one that was damaged. You can see by his poemwritten at age seven that the track is pretty damn good now.
The next issue was writing. Hand writing. Due to his low muscle tone, and his obsession with perfection writing was a huge issue. Oh, and add in a preschool teacher who had told him he could not do it... hey presto! Instant meltdowns.
The wonderful former Principal and his grade one teachers started the slow journey to get past that one. And he did. By around grade five.
But in the past year or so, with the help of now utilising a laptop, his creative writing has blossomed. Incredibly. He now is so very articulate and talented that I no longer sit, brainstorm, push. I do not have to make him read his writing out loud to feel the rhythm of the words, he does this on his own. I do not have to tell him to not repeat and repeat the same phrases or words (yes, you can have echolalia in the written word), he knows not to by himself. Now I read and go wow. And tell him to punctuate (in the excitement of a story spilling out this is his only sometimes forgotten rule).
My oldest has written a children's book for others on the autism spectrum. Simple, effective, positive and heartfelt. My oldest CAN write, by hell he CAN write.
My youngest. Well, when I was in primary school my parents were told by my teachers throughout, "MM is a truly gifted writer, you should be very proud and encourage this gift." This fell by the wayside with High School and Uni (an economice degree? How the frig did I fall into that abyss?"), and the many awards rotted away in my cubby house.
I still have some of my pieces. My youngest leaves my supposed talent for dead. He hooks you in within the first second, and then the story sweeps you away into another realm. His style is polished, captivating, incredible.
For him it is in his blood. Never has he faced the demons my oldest has, it all was there, bubbling away, waiting to burst forth. His writing is amazing. We too brainstorm, but as equals. And I have learnt not to question why, as he always has a reason for taking a certain path. Mind you, it took me constantly being proved wrong in my doubt before I realised I needed to walk away and allow the brilliance to shine. The only small input I get now is again the punctuation reminder, though usually the response from Boy 2 is "Mu-um. It is only the rough draft!"
So, here we are. Three writers. And one amused Big Boy ("No way on earth did my genes have anything to do with this creative side they have!"). I wonder if the teachers truly believe the work is all theirs, because I must admit our writing style and rhythm, whilst different, is similar too. I can see how unique each is, but also note the close parallels. With Boy 1 it is understandable. The years of working together, of brainstorming, of reading, suggesting, helping when he was younger and the information did not flow fluently... of course you would expect my influence to have rubbed off. But all the teachers really need to do is look at the content, because those two boy brains come up with things I could not even dream of!
Boy 2, well whilst the effort was different I still was involved in the very young years. Our weekly sessions of bedtime storytelling where we each had seven nights to weave a verbal spell over the others would have influenced his thoughts on the way a story flows. And I... ah, whom I kidding. Boy 2 - it's genetic, but he is the improved version!
And they wonder why I call them the Augusten Burroughs and John Elder Robison of the next generation...
Day 2: "I can't stress how important it is that we behead this fiend."
"Christ Johno, it's just the foil of a condom wrapper. And you know on these shoots we always use clear skins, they film so much more like unadorned flesh."
Shelley shuddered on the sidelines, awaiting her turn before the camera. When John had asked her to be part of this project she thought it was finally a sign he wanted more committment, that random hooking up would be a thing of the past and finally they would come out into the public arena as a couple.
He soon burst that bubble. A porn film, of all things this project had to be a porn film. She shivered again, nerves surfacing and unable to shake the feeling that this could be the biggest mistake in all her nineteen years experience. Not that she didn't like sex, hell, it was the finest skill she possessed, and she'd thought she'd trap him into feeling with a frenzy of ultimate wet-dream sexual encounters. How could he resist her big blue eyes gazing adoringly upwards as she sucked him off? Hah, yeah, right. It was that very talent that had apparently convinced him she would be perfect for this role, a means to pay off his HECS fees, and as he had convinced her, hers.
Behead this fiend, she thought, I'd like to behead his throbbing fiend alright. I'll give him a free circumcision without the anaesthetic for getting me to agree to this. Knew these braces would be handy for something.
"I can't stress how important it is that we behead this fiend."
Take 1: The Darkness and The Light.
"Master Jonah, you cannot, I implore you. If you behead him my life shall be over!"
"Mistress Wannawanker, I have no choice. It is my duty as the slayer of the church, it is what I was born to do. Again, free me from my shackles so I can cast out this creature of darkness from our world. He no longer belongs in the light, he has become a demon of the deep creature!"
Angelica turned away from his imploring gaze, the sight of this proud man shackled helplessly to the walls of the dungeon tearing at her breaking heart. A heart that now beat with an unbeforeknown passion. A heart as captive as the man on the wall. A heart consumed with love for the beast who stood beside her, her master of forever, the captor of her being.
"Master Jonah, you do not see him as I do, beneath the skin of a beast lies the soul of a man, I swear it does on my life."
"Mistress, you are blinded, the fiend has no heart, he uses you merely to toy with and once done he shall cast you away as he has all whom have gone before you. The beast knows no loyalty, he knows only of his lust for the flesh of innocent maidens, once you are soiled you hold no temptation for him."
Take 2: Passion's Spotlight.
"God, sorry Sam. I don't know why I keep stuffing this up."
Maybe because you stink of last night's excesses, and can barely remember your lines on good days, thought Tiffany. She wisely kept her own counsel on this one, yesterday's debacle when she slapped the smirk right off his arrogant face mid-scene still too fresh in everyone's mind. This was only her second film role and the first with real headline potential and box-office promise. Anyway, she pondered, everyone knew Jay Ramsay was on the way down the ladder whilst her star looked to be ascending quicker than a new moon.
"Let's try it again everyone. Ready, 1=2=3- ACTION!"
"What do you think we should try now Officer Brent? We seem to be quickly running out of options."
"I think we both know we only have one option Miss Stilgo. If we are to help anyone in this mess we need to take back some control. I can't stress how important it is that we defriend this bed."
"CUUUUT! What do you think this is Ramsay? The sequel to The Fucking Social Network?"
"I can't stress how important it is that we behead this fiend."
Oh Lordy, missed last week what with sick kids, extra kids, stocktake, school holidays and end of financial year. Come back hoping to find time to delve in and what do I find? A romance prompt. Yes, I do read it it (nothing better than a good bodice ripper) but sure as shit can't write it.
*Sniff* Not happy Jan.
But will give it a shot if I get time (damnit kids, where are you with some distractions excuses reasons for not completing this when I need you?).
Oh, and rules are:
The Write On Wednesdays Rules: First of all, I am not a big fan of rules. Feel free to get creative with the writing exercises. But please try to visit the other members of Write On Wednesdays to leave a comment. You can grab the button for Write On Wednesdays from my sidebar.
Write On Wednesdays Exercise 4: A Masterclass in Fibrotown: Let's keep the timed theme. Write Allison's prompt at the top of your page. Set your timer for 5 minutes and write the first words that come into your head after your writing prompt. Stop when the buzzer rings! Do this exercise over and over if you wish.
Some of us are starting to see recurring themes/characters (Feisty Girl, for example) in their writing pieces so feel free to continue on from your previous posts. And consider exploring the world of flash fiction competitions...a great genre for aspiring writers like us!
Things to think about:
If you would like the other members of W.O.W to give criticism on your writing pieces feel free to mention this at the end of your post. It would help if you can specifically pinpoint the areas for feedback.
This is a learning process for me too. I started W.O.W because I wanted to get better at writing. I don't have all (any?!) of the answers so please contact me with your ideas and comments!
I walk arm in arm with my sons. At an age where it is considered uncool to hold your mother's hand, arm, hand my two do not hesitate. As we walk we talk. "Did you hold Nanna's hand when you were our age, Mum?"
"Yes" I answer, then begin to laugh.
And so I tell them. My mother had severe sight issues from my first memory. She, her best friend and my Grandmother had sat for hours in her terrace house childhood home and watched the welders work below in the factory next door. Back then it was not common knowledge that such unprotected viewing would cause permanent and irreversible damage. My mother was the worst affected of the three.
That term... bottle top glasses? Well, those were hers. So thick that her beautiful brown eyes were distorted behind them.
As a teenager in the 1930's she loved going to the beach. It was even more appealing as she could use her sunglasses to hide her vision issues from the coolness of a teenage world. Yes, even back then people with perceived weaknesses were teased, it did not help that she was not only stunning but chronically shy.
As she grew older her sight grew worse. By the time I was a teenager my mother had been considered legally blind for quite a few years.
I grew up walking arm in arm with my mother. I never developed teenage embarrassment, for I knew when we walked together if she did not have hold of my elbow she would trip, fall, be hurt. To the casual observer it merely looked as if our arms were linked in affection (as they were). They did not hear the running commentary between us...
Copyright Madmother - 1986
Now to the reason I laughed. As I grew older we always joked I was escorting her nicely limited Mastercard across the road. Once I graduated and hit my middle 20's the joke was switched to her escorting MY Mastercard across the road as the limit was higher than hers.
This was the story I told my children yesterday.
"Wow Mum. You have more than one credit card so we both have to escort you and your purse across the street then!" This from my impish younger. The older just laughed. And both tightly linked their arms a little harder through mine.
I lived my whole life with a loving mother who was sight compromised. Now my very best friend is facing the same. Her children are six and nine (nearly), and she is now classed as legally blind. Retinitis Pigmentosa. A genetic eye condition that causes the light-sensitive retina, located at the back of the eye, to degenerate slowly and progressively.
She is beautiful, positive and a wonderful joy to be around. She cannot see kerbs or stairs or the joy in her children's faces if they are not right next to her.
Like my Mum, she has days when it gets to her, when her dreams of the future are clouded and dim. But, again, like Wise Woman, these are rare.She does not want pity, she wants life. We tend to joke about it, though there are times when laughter does not help.
When she told me of her diagnosis I could tell she was over the pity party others had been throwing for her.
"Okay, so not good?"
"Nope. Didn't want to tell you before, didn't want our friendship balance to be compromised with you feeling sorry for me."
"You just didn't want to tell me all those times we went out and got blind you really were!"
When she stopped laughing...
"Oh hell, I knew I should have told you before the others..."
"Hey, don't worry, at least I have someone to give Mum's talking books to when she's gone."
"Oh, you are bad, seriously bad. Thank you."
See, both these women in my life were alike. Determined, positive, strong. For all my years with my mother I am now able to support, console, listen, arse-kick, and just understand what my friend is going through. And when things get hard I remind her of the 90 year old still managing to do her tax on exel. On a REALLY big computer screen, yes. On the biggest font you can imagine, yes. On the highest view limit available, yes. But still determined and capable. Right up to the end. If you make your mind up you can do anything... it just may be that you have to approach it a different way from before.
Copyright Madmother - May 2011
Oh, and as my friend's credit card limit is higher than mine, I just might have to escort her carefully across busy roads for years to come.
I'm sure you've all seen this on Facebook, blogs, websites recently. But it was so appropriate for how I feel today. I am still in my pyjamas at 3pm. Not because I am sick or depressed but because I have been madly answering phone calls (business), looking up files (business) and as it is school holidays, I DON'T FUCKING HAVE TO BE DRESSED TO DO ALL THIS!
This week has been bedlam, I have had extra kids over (great for my two) for four days of this week, stocktake on our retail store was yesterday (yes, my two were dragged to that), and there are all sorts of negotiations going on with our other businesses.
So, yes, today I smell bad, I am not yet dressed, and I have not yet fed my children. Don't worry, at eleven and thirteen, when Mummy says - or in this case mouths with one hand over phone mouthpiece - "get it yourself", they actually do.
I am going to have a wine tonight. And probably a whine, but the worry with that is that Big Boy has had a worse week than me and he will probably top mine as I top up his glass...
I am a Madmother of two wonderful boys, wife to an amazing and tolerant man, daughter to an incredible woman whom we lost Oct 2010.
I have 4 blogs. Meandering is rambling, general, whatever takes my fancy stuff. Woven Words is for my short stories and creative writing, Nimbobulan Dreamings is my kids story. And my latest is Hellion on Wheels: my Roller Derby journey. Feel free to look at or follow all 4 if you wish.
Do note, however, all blogs are copyright of the author. They are not to be copied or printed and distributed without written permission from Madmother.