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There are many positives I’ve discovered having been on this path coloured with more than a few negatives.  However, I’m sure I’m a much better person for it.   Well that’s my story and I’m sticking to it.  You got that?  Good. 

Ten years ago I first heard the word tumour uttered by a doctor in reference to my, then, six year-old son.

My first experience of dread as my tiny son was wheeled away, the doors hissing as they shut behind him, for his first CT scan without me.

My first trip in an ambulance (as well as my longest one – ever.  An hour and a half that felt like eternity…).

The first time I had ever set foot in the Childrens Hospital, let alone a paediatric oncology ward.

My first meeting (even if it was late evening) with the man who would oversee my lad’s treatment… and deal with me for the next 10+ years through some of the worst of times.  He needs a medal I’m sure.

The first time I ever really remember feeling true fear.

But this period of time has taught me a lot and those are the thoughts I’ll keep.  Here are just a few of them:

1. Be kind.  You don’t know another person’s journey and sometimes the smallest gesture can mean the most.  Even a hug.  Even a hug from a stranger. 

2. Be grateful.  No matter how bleak it seems, there is always something to appreciate.  You just need to find it.  It will get easier to recognise though!

3. Don’t judge.  I’m not qualified to judge someone else.  So I don’t.

4.  Acceptance.  Take others at face value.  You never know where you’ll find a new friend on this path and you can do with all you can find!

5. Be open-minded.  You never know when an opportunity will present itself and you need to be open to accepting it when it does!  If I hadn’t been ready to listen when I did, would we be in this same position today?  I doubt it.

6. Forgiveness.  Not everyone else understands everything you are dealing with.  That’s not their fault and it’s not necessarily up to me to make sure they do.  I’d much prefer others remain oblivious to all we’ve been through, even if their own journey has been similar. Life is too short to feel bitter about any of it.

7. Faith.  The hardest lesson I ever learnt.  To trust.  To have faith.  In myself, my son, my daughter, my networks, our support team as well as others we didn’t know.  Sometimes it’s all you have.  Hang on to it tight.

8. To take time out.  Always.  With friends or on your own.  Get sleep and plenty of it!  We deserve it.  All of it without guilt.  Laugh, love, play and remember these times always. 

9. Make memories.  Take your child/ren to places and experience things you’ve never done before.  There is always a way if you look hard enough.  Take photos.  Lots.  Smile and plan more of the same straight away.

10. Reach out.  When you need it.  You are never really alone.  Sometimes you need to ask for assistance.  There’s no shame in that.  Help is out there if you know where to look or ask for it.  If we don’t try, we’ll never know.

11. Conviction.  Stand up for what you believe in.  Sometimes if you have nothing to lose you still have lots to gain.

12. Expect the unexpected.  Miracles do happen.  Often.

I’m not perfect and I sometimes forget what I’ve learnt.  I’m still learning every day, if I wasn’t I wouldn’t be still on this trip!

Ultimately it’s been an upward outcome for us to date.

I have a (somewhat obnoxious, independent and thoroughly frustrating) 16 year-old who is very much alive, even after constant warnings and second opinions that the finality of his condition was a “fait accompli” due to many factors.  Rarity, lack of knowledge and understanding of the condition as well as the lack of viable treatment plans with any positive outcomes.

But he is alive and healthy.  We are still a family – that may have grown somewhat.  We still laugh.  Most days.  We still drive each other bonkers.  But that’s okay.  We’re blessed to still have that luxury of time, a decade down the track.  I just wish everyone else on their own journeys the same.

To all our friends and loved ones, Thank you.  We couldn’t have done it without you. xxxooo

And it wasn’t the eldest, whose tendancy to mouth off has found him at the wrong end of a few fists over the years. Nope.   Nor was it my over-animated four-year old daredevil who’s one aim in life seems to be to scare the heck out of his mother as his older siblings never did.  Ever. 

The nine-year old miss is also uninjured.  Well, unless you ask her of course.  I’m sure she would find something.  After all, she has three brothers to vie against for attention.  Yay. 

So that leaves, of course, the child in question.  My quiet, often reserved and “go slow” six-year-old. *sigh*  Yes, he who rarely moves at any speed faster than a snail whilst constantly adjusting his glasses with a finger as he stops once in a while to check his view hasn’t suddenly changed.   That of course, is AFTER he doesn’t hear the instruction (or chooses to engross himself in an activity more to his own liking ) and takes a good 30 seconds to adjust his position and begin said journey. Yep, ’twas him.

Upon arrival to collect my middle male offspring from after school care last Thursday, it was pointed out that I had missed a phone call from the carer.  Unaware of it due to having already answered a call from her earlier in regards to my nine-year old miss who was off to camp my heart dropped.  I had forgotten to let them know of her absence.  Oops.

However Master six was grumpy and sullen.  He had apparently fallen heavily at school whilst running (with a supposed superman style flight attempt) but hadn’t openly complained of any soreness.  The teacher had just kept an eye on him as he waited for the bus to after school care and informed the coordinator to watch him.

It was meltdown city from there.

My gut feeling told me there was more to this.  Much much more.  At home, he crouched down beside the couch in the lounge on the floor cradling his right elbow.  No tears unless he was lashing out at his baby brother who walked nearby.

Mum instincts rang for the home visit doctors service.  Whilst waiting for the GP’s arrival, my little man ate his dinner quietly at the table.  I was grateful for small mercies since he is left-handed.

After a few “ouches” as his shirt was removed and a gentle shower, he was dried and redressed.  He returned to his prior position in front of the couch to await the practitioner’s visit.

The doctor didn’t take long to point out the difference in my lad’s collarbones upon comparing them.  It was an evening trip to the emergency room for us.

Another two doctors, three nurses, a dose of nurofen, a movie, a sleep, an X-ray (whilst asleep!) and a sling later, I was informed he’d snapped it cleanly in two.  My heart sank.  Bad mama moment.  I missed it.  I hadn’t protected him.  It didn’t help being in the hospital either.

During the short drive home, I had time to think.  He was just like his older brother… not complaining of being in pain.  At all.  Unless its extreme.

I sometimes wonder if that was to make up for a younger sister, who thinks screaming is an acceptable form of persuasive everyday communication…

For now, my precious six-year-old has a purple homemade sling, a cheeky grin and very little need for painkillers.  Ask me how he’s going in another three weeks… can we last the distance?

“You didn’t DO anything again!!! You need to turn RIGHT as well as left!!!”

“Okay, start again!!!”

“UGH!!”

The lounge room was the scene of much animation this morning.  The Wii was on and the two boys were playing resort games.  Much jumping, yelling, cheering, laughing and loud instructions.

“No, not that button, that one – HOLD it!”

“That one?”

“Yes!”

“Oh!”

“Don’t let go of the button Dude… Again?? No the Z button… it shoots!”

A giggle.

I’m sure the neighbours won’t mind.  After all, it’s not often the 16 year old emerges this early in the day from his dark, damp dungeon of a bedroom, let alone spends time PLAYING and being social.  The real surprise was that it was his baby brother he was interacting with voluntarily!

“How do you DO that?  You’re not even cutting it right!!!”

Much panting, puffing and squealing follows from the younger boy.

“Nooooooo Awwwwww!!!  Sushi!!!” I spin around at the older lad’s raised voice.

“I WIN!!! YES!!!” the littlest man was grinning and bouncing.

“How did YOU win?  You aren’t even playing it right!!”

“Mwahahahahaha!”

“You can’t win again… it’s not your turn!!!” the teenager argued.

“Yes, I can!!!”  more panting and puffing from the four year old.

I looked over at the younger boy and asked what he was playing.

“Easy mum!  We’re playing whacking and zinging!!!”

“Careful!  CAREFUL!!”  His older brother countered with.

“Mum, it’s okay.  It’s just fencing, sushi slicing and archery,”

Of course… that’s just what you play with your little brother… right???

My ex and I have an interesting relationship.  The children travel between us each week (yes, on the plus side, he takes them weekly!), the last 12 months or so has been without speaking to each other in person though.  Not because we always argue… or such, just that it’s easier for both of us this way.

We email or text if important… but a go between has also helped our relationship since our official separation just over four years ago.  It may seem inconvenient but I call it a more effective method of communication.

No animosity, no harsh words.  I give him credit as a father who loves his children and does what he believes is best for them.  As do I as their mother.  If we agree all is good. 

The children have asked why I don’t “talk” to him directly and I’ve explained that we don’t always agree on stuff and this gives us a chance to think over what we need to say before we say it.  Simplistic perhaps but enough.  I’ve always been big on having a united and calm front for the children.

This night, their father called to sort some details for the week and decided to speak to the children in turn.  He started with our four year old… who has mastered the speakerphone (and thus insists on using it at each and every opportunity) much to our chagrin.

After much to-ing and fro-ing in the conversation (as it does with a four year old), our precious son suddenly realised he was using my mobile phone and announced to his father as such.  Funnily enough, his dad has been ringing that same number for over ten years now – I’m thinking he realises it’s mine… if not, I should be worried.

However, during the conversation he was struggling to hear clearly due to other background noise from other children…

“What was that mate?”  *cue noisy, eating and  sniffling with added conversation from noisy teenagers to complete*

“This is Mum’s phone!”  *more sniffles and crunching*

“Sorry mate?”

“You remember… Mum, who you used to fight with?” 

Coz of course that’s all he’ll remember me for… right???

*sigh*

“Well I know she likes to wear shorts and t shirts but did she actually say that?” I calmly asked him, knowing the quiet classmate he was referring to as she had been in his pre prep years as well.

“Sometimes she wears the boys uniform to school… but sometimes she wears the girls one instead.  She says she doesn’t like it though,”  I could see his mind ticking over as he thought aloud.

“She’s a tomboy!” his nine year old sister interjected, followed closely by  “Weren’t YOU a tomboy mum?”

My thoughts raced, it was indeed true that I preferred jeans, flannelette shirts and t shirts to skirts and dresses.  I loved riding dirt bikes around the back paddock. Campfires under the stars and horse riding if the mood took me. I had a red and silver 12 speed racing bicycle and I avoided pink at all costs.

Mum (perhaps attempting to salvage some femininity when I turned 15) enrolled me in Deportment Classes in Year 10.  I tried… really I did.  I failed. Oops.

My younger sister was the girly type.  She excelled at embroidery (thanks Mum), cooking, typing and all those feminine skills that I struggled to even contemplate WHY we needed to do them in the first place!  She even wore (GASP, SHOCK, HORROR!) dresses and skirts if they were in her wardrobe!  Her lilac pushbike had a U frame to make it easier to ride in a skirt.

She passed Deportment classes and went on to do her Debut.  *sigh*

My logic wondered why I couldn’t just have the equivalent $$ cost of  “the” dress towards a new motorbike.  It made much more sense to me… after all, I’d use it more than once!  Well I would.

“I guess I was,” was my short response to my offspring.

“Oh?  So did you want to be a boy too Mum?” the six year old was peering at me carefully.

“I don’t ever remember wishing I was a boy.  I like being a girl,”  it was the truth.

“Darn it, you’d be a great friend if you were a boy instead Mum,”

2. Fumigate and disinfect the teenager’s bedroom.  Preferably extract him from the mess before commencing this activities due to safety requirements.  Mine.  Be sure to check every nook for hidden food wrappers.  Usually contraband ones.

3. Book doctors appointment for my four year old male offspring.  General check up, referrals for follow up therapies and reassessment of anaphylaxis triggers before he starts school/prep. Prompt for possible epipen prescription instead of antihistamines.   Remember to scare new teacher half to death with the knowledge she will have a child sensitive to two everyday common foods… that aren’t nuts. Yay us.  Advance apologies to the teacher…

4. Make another batch of lemon butter.  I swear the children inhale the stuff.  Plus a batch of dairy free coconut lemon butter – to cater for a couple of the food intolerances in the house.  I’m still working on an egg free version for the remaining one. Promise I am.

5. Prepare a batch of bread rolls, a loaf of multigrain bread and another few jars of vegie stock for cooking.  There is no grocery shopping required for any of this – the bulk supplies are still holding up well for now. Yay.

6. Find the lounge room floor.  It’s somewhere under baskets of clean but unfolded washing (known locally as the Foldmore Range), numerous Duplo blocks in various stages of construction, scattered N64 game cartridges (often put up by the older children and immediately pulled back down by the younger two…), random toys, multitudes of cushions from the sofa and the occasional towel or blanket.  I know it’s under there somewhere, I have vague memories of it.

7. Pay the bills.  Without being distracted by shiny things.  Yes.  All of them. *sigh*

8. Book a dentist appointment for my eldest.  Getting him to attend it may be a challenge worthy of an olympian heavyweight weightlifter yes.  However, booking it I can do.

9. Convince same teenager to attend his Centrelink appointment on Friday.  With me.  Perhaps he could show some enthusiasm along the way… although I’m not sure he even knows what it is.  Regardless, he has to be there.  If he can manage it, socially acceptable would be a bonus.

10. Remember to take my six year old to his speech therapy and occupational therapy sessions straight after school… on two separate days… just need to make sure I don’t mix them up.  Of course I would never do that… honest!

*If I forget this list, someone please give me a swift but loving shove to remind me.  I may need encouragement… *

“Were you ever any good at anything when you were younger?”

Well of course I was… LOTS of them came to mind immediately.

I was great at reading, cooking, hanging out with my friends, playing Donkey Kong on my Nintendo Game and Watch (remember them???), avoiding doing my homework, annoying my siblings until they screamed , riding a motorcycle over large dirt mounds in the back paddock, bicycling the five kilometres home with no hands (shhh don’t tell my mum!!  ), saving my mother on clothes washing (how many weeks CAN you wear the same pair of jeans??), playing my cassette deck LOUD, making a mess in Art and pulling off a pretty good grade at the same time, organising my patrol of Girl Guides (don’t die of shock… I was! ), playing guitar, taking opportunistic photographs of people in awkward situations, laughing and telling stories.

Not just any stories… but retelling events that happened.  In a good way.  I seemed to have a knack for it.

“I was pretty awesome at a lot of things but I really liked reading and telling stories,” I finally decided to impart.

“Oh?  Are you STILL good at that?” she was looking at me… or was it straight through me?

“I guess so…” I smiled.

“Well that’s not going to pay the bills Mum,” she raised one eyebrow suspiciously.

“No? Are you sure?”  I started to ponder the possibilities…

“Oh well, guess you’d be good at blogging at least,”

I live in hope dear daughter… I live in hope. 

It wasn’t like it could be in too many places.  Where CAN you hide a double mattress?  Not many places in my house let me tell you!

“Have you checked the cupboard?” I countered as I cleaned up the kitchen after dinner.

“Yes,” came the unfazed reply.  She hadn’t moved, I could tell from the direction of her voice.

“Go look in your brother’s room then, it may be under his bed,” I was wracking my brain for ideas.

“But what if he tells me off?”  Her reply made me laugh.

“Well unless you can hear him 50kms away, I doubt you have an issue.  He’s not home.”  I waited.

“How do I KNOW that he’s not home?” It now sounded like she was standing outside his closed door… a somewhat slight improvement.

“Believe me, he’s not.  I dropped him off at the train station three hours ago,”  Well I did, at his request.  After all, he’d asked politely.

“What if he walked home without you knowing?”  I stifled a giggle.

“He didn’t.  Just check it isn’t there… and leave everything else alone!”

“Ok… but if I’m not back in five minutes, send a search party!!”

*Oh and if you really need to know… it was in the hall cupboard.*

He’s been the last at home with mum during the week as his siblings attend school and courses.  He’s relaxed and confident and we somehow just co exist on those days without too much incident.

His siblings were another story… his eldest brother was an ever enquiring child.  Tiring in his constant quest for answers.  He wore me out mentally in any given day.  Books, computers, games – he consumed them all tirelessly.   His sleep pattern was short.  Bedtime was 7:30pm but he’d sneak out to sit on the stairwell and watch me clean and stitch until around 10 ish.  He’d be awake and ready to attack the day by 5 am though.

To reduce the amount of time we had getting frustrated with each other, I enrolled him in our local Montessori Childrens House.  By age 4 he was attending 4 days a week and doing brilliantly.  My stress levels had also reduced considerably!

My little Miss was just as inquisitive and thought-provoking.  Her pre school year was taken up with two days at one centre and three at another to make up the time.  It was her choice though.  I started her at one centre and within weeks she was constantly asking to attend on the remaining days.  She flourished. A social butterfly, she is also gifted academically.

Master six was attending pre prep three days a week at age four.  On the off days, he wrangled with his (younger by 19 months) brother and demanded attention for his constant frustrations.  There never seemed to be a quiet moment between the specialists appointments, sibling interaction and day-to-day routines. 

In contrast, my youngest now only attends his pre prep centre two days a week.  Until recently he also had a day in family daycare but when the circumstances of his daycare mum changed, I seriously pondered long and hard whether a replacement was required or worth it.

It’s one term until the end of the year… less than three months until 2012.  For most of this year, he’s spent a day at home with me, a day at family daycare, a day with his father, two more at the daycare centre and then weekends with his dad as well.

He is a bright and chirpy lad with an endearing cheeky charm all his own.  He’s active and full on, physically and mentally.  He loves stimulation and craves it.  So it was with much in trepidation that I decided to keep him home another day a week instead of finding a suitable new carer.

Somehow in the last few weeks, we’ve bonded more than I’ve ever had a chance to with him before.  He’s the snuggly one cuddling up to me in bed in the morning.  He’s my little comedian and goofball when things are a little off kilter… I realised a couple of days ago just how much I’m enjoying his company during our two days together.  Sometimes his father has him for some of the second day but I find myself selfishly wanting him with me more.

Perhaps this is his privilege as the baby?  Maybe I’m less inclined to wish this time away because he is my youngest?  I only know that I sure wish this year contained more days, weeks and months than it does.

Because inevitably, 2012 will arrive with all the usual fanfare and my smallest, smiling, self assured offspring will eagerly stride off to join his older siblings at school. He will also have the honour of officially being the youngest to have attended school. The older children all started “big school” at age five.  He will still be only four on his first day.  *sigh*

I’m sure my own importance in his life will reduce slightly on this new adventure… but it doesn’t hurt to hope otherwise.  Right?