104 Needles

That's how many, on average, my son has in any given year.

104 times each and every year I must prepare medication, draw it up into a syringe, before sticking the sharp end into my little boy.

More, if you count the extra shots for blood tests he needs to monitor the effect of what we inject.

You better believe both he and I hate it every single time.

See, despite being diagnosed with supposedly the 'best' type of Juvenile Arthritis there is (if there is any such thing as 'good' JIA), with traditionally the best prognosis for remission- medicated or spontaneous- by the time a child hits adolescence; my child isn't following the textbooks and instead of stopping the meds, we've had to increase instead.

9 years into this JIA journey, he and I are still finding a way to making medicine more fun.

When your child is first diagnosed with a disease like Juvenile Arthritis, a parent- usually the mother (nothing against dads, it's just the way it is) gets a fast track to a medical degree, without the fancy certificate to whack on your wall.

You pick up the lingo almost by osmosis to understand the parade of practitioners you pass on the path to a pain-free childhood. I can discuss ANA, CRP, ESR, FBC, and LFTs with the best of them (my Beloved however has missed a few lessons and doesn't yet know his RFs from his ABCs).

You also get a few tips on how to administer medication at home that is more at home in a hospital. If you're lucky, it comes as a liquid that's fairly well received. Tablet form's a little harder to swallow. If you've ever given a pet a pill, you'll know just how hard it can be. One of the tricks is hiding crushed tablets in foodstuffs of similar colour until they catch on - despite our best intentions our son still has an aversion to yellow food (Methotrexate is yellow). He's not alone, studies have shown kids all over the world have had the same reaction to cheese, custard, bananas, even egg yolks.

When all else fails, it's needle time.

For someone who's never given an injection before, it's a pretty daunting task.  Tougher still if you're among the many who have needle phobia and faint at the sight of blood (my Beloved again).

They tell you to practice on an orange, or any citrus fruit with a skin similar to that of a human body - just take an empty syringe and practise poking the needle through. A little deeper for intramuscular injections, a little less for subcutaneous (see, told I could do medico-speak).

Braver folk take the next step and stick it into themselves, to find the spot that's as painless as possible.  I've only ever done so by accident (it wasn't that painless, incidentally), and over the years I've become much better at avoiding needlestick injuries.

There are also ways to numb the site so it'll be alright on the night. But EMLA® and AnGEL® both take time to work...time for fretting about what's to come.  Ice can numb the skin, but also makes it tougher to pierce and it's more like poking through a watermelon than an orange. After a few years of tears, the doctors told us as long as the skin itself is clean, you can go without, which reduces the pre-emptive fear somewhat, if not the sting itself.

We've come through it about 364 times so far. That's like a needle every day for a year, with a day's grace for Christmas.

And so twice a week for the next year or so we will do it again, and my little boy and I will share the pain with the purpose of one of these drugs working one day.

104 more chances to stop a disease in its tracks, and bring an end to using my son as a human pincushion for the rest of his life.

I don't want to think about how many needles we'll be up to, if we don't.

Jx

©2012

Small Steps

In June 2003, my 13-month-old baby boy stopped trying to walk, stopped cruising, stopped crawling, and started crying and clinging.

So began our journey with juvenile idiopathic arthritis, or JIA – a long, hard, often lonely road, with no end in sight just yet.

We'd known since he was six months old that something was not quite right; at that time, he'd been diagnosed with iron-deficient anaemia and cow's milk protein intolerance.

Then, at 13 months, our son's left ankle swelled up right before my eyes. But it wasn't until B was 19 months old that he was diagnosed with JIA, which the doctors in hindsight say was probably causing his symptoms when he was six months.

B didn't start walking until he was 21 months old. Now, nearly five years later, we are still treading carefully with this disease.

JIA is a cruel, chronic, sometimes crippling childhood illness. The term refers to all types of arthritis that affect children.

Too many kids with JIA are written off as being whingy, lazy, or slow to grow. JIA is often misdiagnosed as 'growing pains'.

At first, B was diagnosed with 'pauciarticular' juvenile rheumatoid arthritis, a type of JIA that affects four or fewer joints. His diagnosis has since been upgraded to 'extended oligo JIA', since the disease has spread to more joints.

JIA is felt by every member of the family. The affected child often cannot describe what they are feeling, since the average age at onset is just two years old.

Parents may go through a guilt and grieving process as they blame themselves for either causing it, or being unable to cure it.

And siblings have their own emotional rollercoaster ride as they see their brother or sister getting extra attention for their pain.

But since JIA is not hereditary, it has the added effect of making one feel incredibly alone.

Now, I am not one to sit back and suffer in silence – I want to know the answers, and will keep asking until someone can give them to me. I want to share my knowledge and support with others too.

If I did not turn the despair that I have sometimes felt into positive energy, I would just be a little saline puddle on the floor.

I'm still trying to find the answers to many questions, but I've spent a lot of time on the phone sharing what I do know with other parents of newly-diagnosed children (what can I say, I like to chat!).

And I've set up an Australian online support group for JIA, which now also has members from all over the world. Anyone, at any time of any day, can post a query, or have a cry, and someone is 'listening'.

There is little real awareness of JIA in our community, either among the general or medical population. So I designed a logo with the message that "Kids get Arthritis too!".

We wear it every day, as a kind of walking billboard. It starts a lot of conversations!

When I learned that JIA is actually more common than type 1 diabetes, cystic fibrosis, or cerebral palsy – yet was not automatically eligible for the Centrelink Carer Allowance like these other illnesses – I fought for it to be so.

When I realised there was no branch or organisation specifically to help JIA children and their families, I bothered our state Arthritis Foundation until there was one.

When I saw how far many families have to travel to get treatment, I started working with my state and federal politicians and our local children's hospital, to get regional JIA clinics operating.

And when I heard about some awesome parents in the United States who'd set up the American Juvenile Arthritis Organisation (now JA Alliance)– which has an annual conference that brings together families from all over the USA – well, I knew we had to start fundraising and get a passport!

Our trip to Pennsylvania in June-July 2007 convinced me of two things:
• Australia is not so far behind in its medical management of JIA – in fact, in some ways we are ahead. (B's health team is fantastic!)
• We still have a way to go to get a national organisation and conference such as the AJAO happening here.
(I also learnt that five-year-olds are intrigued with public rest rooms, but that's a whole other story!)

In amongst this advocacy, I work two other jobs, and I have the everyday demands of being a wife and mother.

I dread having to give B a needle in his little tummy every week, and struggle with the fear of side effects of the various medications he must take.

I hate having to hold him down for blood tests and other medical procedures. I get tired of rounding up the kids for yet another trip to hospital. And I despair at the stares in the street, and the bullying that B suffers at school.

But while I absolutely despise this disease, I will not let it stop us from loving life.

I try to enjoy every day. I relish every time I hear my kids laugh, or see my son try to run.

And at the end of the day, I feel a kind of humble pride that I can make a difference.

Jx
©2008

Singing in the Car

I think adults have a lot to learn from children.

I also think that if more adults were paying attention, the world would be a lot better place.

My most recent education has come from my young son, who has already taught us so much so far.

He has Juvenile Arthritis (JIA); he was diagnosed as a baby and has known no other way of life.

After years of constant pain, damage and disability, he has been accepted into a new clinical trial for the biologic known as Etanercept (Enbrel). It has been a loooooong time coming, and still cannot come soon enough for our liking. There’s only so much pain a parent can bear seeing their children suffer.

Due to very active and aggressive arthritis in his little neck, Master B has been unable to lift or turn his head for 6 months (he turns his entire body- try it, it's exhausting), both wrists have been swollen and unusable at times for >13 months (makes dressing, feeding, and toileting fun), his hip and shoulder are also giving him grief (but we've been able to keep him out of a wheelchair!), his jaw has made it difficult for him to open his mouth to eat at times (liquid diet when that happens, and not even the one that consoles adults from time to time if you know what I mean), and most recently his elbow has swollen up to the size of a tennis ball- he simply cannot straighten his arm. Oh, and since he stacked his scooter last week he has also flared-up his knee (along with a ripper of a graze). So you can see he has been struggling. As have we all.

He was in hospital three times last year with another visit on the cards if he did not get accepted into this study. He has "officially failed" all the medication he has been taking for the past, gosh, 7 years next week! That's a lot for a little lad to take, considering he’s only just turned 8.

Anyway, late in April our brave boy endured a 12 hour day, including 4+ hours travelling and 4 hours at the Children’s Hospital for blood tests, urine samples, and physical examinations, for the Screening portion of the trial. He could only begin the 2 year study if he tested negative to Tuberculosis (Tb) as biologics have been known to stir that dragon if lying dormant.

In May we did it all again for the Baseline visit, which came with the added bonus of his first round of Enbrel injections- to be administered once a week for 96 weeks. It was another marathon effort - 9.5 hours all told to travel and do even more paperwork to get things going (he is child #21 of 100 worldwide to start the study, the first in NSW and second in Australia).

While he wasn't overly fond of the blood tests he had to have again, at least it was only 2 tubes this time, not 6. And unlike last time where he suffered a little ‘performance anxiety’, he was both keen and capable of 'peeing in a cup' for the urinalysis side of things - giggling like a goblin as I tried to safely remove my hand holding the specimen jar out of the line of, um, fire ("Thanks son, we've got enough now. That's it, you can stop. Hold up, please!!!")

He did hide behind the door while I was preparing the Enbrel but was coaxed out and chose to have the injection in his arm. For those who don't know, this drug comes in 2 separate components- first you have to fit a needle to a syringe of sterile water and inject that into a vial of powder, then swirl it together carefully to mix (not shaken but stirred - James Bond would not be impressed). Then you have to fit another needle to another syringe and draw up the prescribed amount of mixed medication ready to inject subcutaneously or intra-muscularly to be more precise. Since I have been doing Methotrexate (Mtx- a nasty chemo drug) for years now the nurse thought I was totally capable of giving the first shot myself; she even said I flicked the bubbles out like a professional, LOL. Sadly my Beloved is needle-phobic, but does a great job of cuddling the lad.

Well I have to tell you, Master B said he felt the Enbrel was working that very first night! It was obviously kicking into his Temporomandibular joints (TMJs) as his little jaws did not stop flapping the entire next day, LOL. And he was up skipping (would you believe) at 9.30 Wednesday night. He beat his best mate in a running race at school on Thursday. Says he feels like Superboy!

Anyway, when he came sleepwalking into bed with me last night (luckily my Beloved was on night shift or things would've been a tad too cosy for comfort) I thought he may have been suffering a little (has happened before, his subconscious brings him to me right before he pukes or cries some nights. He's also excellent at taking himself to the loo while asleep, yay). But he awoke this morning, and aside from being surprised to find himself in my bed, he said he has NO PAIN AT ALL- for the fourth day in a row!

We can't remember that ever happening before.

While he now faces two injections a week, along with monthly blood tests and all that goes with it, our dearest wish is that this drug does the trick and our brave little boy can finally begin to enjoy a carefree & pain-free childhood, like he deserves. Doesn’t every child?

We’re back to the hospital again this week for the next phase of the trial.

And you know, on top of all this, he just keeps singing in the car on the way home!

How many adults do you know who would do that?

Jx
©2010

Potty Time

There’s a lot of things I love about being a parent.

There are also things I’m liking not so much.

Without a doubt, the thing I would gladly never go through again: is toilet training.

I now know why some call it potty time. Because it certainly gave me a case of potty mouth a time or two (under my breath, mind you, I’m not that bad a parent).

And it’s true what they say that boys can be trickier than girls. While it took my son a good few months to get the hang of it (and let’s face it, any female who cohabits with a male of any age knows that some never really do), my daughter decided that nappies were sooooo last season, at roughly the same time as that. Two for the price of one. Bargain.

But the departure from diapers only brought about a whole new chapter- the fascination with public toilets. What is up with that?

I swear, even if the kids have gone before we left, we can never go anywhere without at least one of them desperately desiring a dunny. More often than not it’s both, oh and not necessarily at the same time either.

Normally it doesn’t worry me (I just have to get my gag reflex in check before entering the public domain): I’ve got the anti-bacterial spray for the seat, a tissue or two in hand if there’s not enough loo paper, and enough energy to assist the littlies as they go about their ablutions.

Yes every time we have to use a loo or two on our travels I am reminded yet again of my enduring preference for the bathrooms at home. Bit difficult when you’re off attending a medical conference about your child’s condition, held in Hershey Pennsylvania.

I call it The Great Toilet Tour of 2007. With good reason.

On a 15½ hour flight, my son and I managed to squeeze into the aircraft toilet no less than 14 times. And he was asleep for about 7 hours! I have never been on an international holiday before, and had no idea about what joys awaited me in that cramped and stinky little room. Nor just how cramped and just how stinky that little room would feel about 10 hours in.

*shudders*

Things didn’t get any less claustrophobic once we touched down in the US of A either. Oh no, not when there were soooo many new and exciting things about North American amenities, we just had to try them all. Automatic opening doors, interchangeable seats, infrared flush, remote action soap, water and hand dryers are just too awesome for a 5 year old. A little less awesome but equally as, shall we say interesting for mothers of same, I can assure you.

Yes we hadn’t even been Stateside for 3 hours before we were calling for maintenance of the Holiday Inn nearby LAX. Aside from that old anomaly of the water going down a different direction (it really does seem to, you know), my son was transfixed, and just a little concerned that the water level is quite a lot higher before you even begin to contribute. I have to admit to being a tad wary myself, lest I inadvertently get the bidet effect whilst parked on the potty. What isn’t supposed to happen, apparently, is for that water level to get higher still, until the bathroom floor gets an impromptu wash. A performance that was to be repeated again at a brand spanking new Church just outside Atlanta Georgia, when my son with due diligence ensuring his hiney was shiny accidentally overloaded the porcelain with paper.

Yes there I was, on my knees in the lavatories, muttering holy hell about having to clean up the mess, lest the preacher think any less of his Aussie guests.

But the best was yet to come.

The CNN Center is equipped with some of the most breathtakingly brilliant technology in the modern world. And it most certainly took my breath away. Especially when my son decided to disengage the doorlock while I was still posed kangaroo-style over the toilet bowl, moreso when amidst my shrieks for him to “Close the door!” I moved slightly out of the line of sight of the automatic flush infrared beam, and got to experience what a bidet would feel like after all. Our local tour guides said in spite of the noise levels inside the centre, they distinctly heard my squeal from where they waited outside. (I’m surprised they didn’t hear it back home in Australia, just quietly.)

So whilever I’m waiting for one or the other or both of my offspring to offload at a bathroom stall somewhere, I try to remind myself that they’ve reached a very valuable milestone by being able to do by themselves (and with the door properly locked too, I might add).

Now I get to be one of the mums nodding in sympathy whenever I witness those still in toilet-training mode.

Been there, done that, not going back.

Jx
©2010

Sink or Swim

With summer coming on I started thinking it was the right time for a refresher course in swimming.

Oh not for me- I avoid a swimsuit like a cat avoids a bath- no, for the children (who have no qualms about being seen in spandex- or even in their undies if the urge strikes).

Since we happen to live on one mighty big island, with our home nestled between a lake and an ocean, I’m all for teaching water safety from a very early age. I mean, it takes a surprisingly small amount of liquid for a child to drown (as little as one inch of water!) and I know people who’ve had that tragedy happen, so I wasn’t taking any chances with my precious ones.

As soon as they reached the required minimum age (6 months) we were off to swimming lessons at a local centre.

They took to the activity like the proverbial duck to water, and I’ve gotta admit there’s a lot of enjoyment in taking your baby by the hands and floating them about in the warm water. (Not so much fun the mad dash to the change room when the water surrounding your child becomes suddenly and suspiciously warmer still...)

Things were going, um, swimmingly, until a ‘misunderstanding’ between the instructor and ourselves. Sadly, despite being well aware that our son had Juvenile Arthritis (AKA JIA) and that mobility was an issue some days due to disease activity, she still thought it perfectly fine to label him “lazy” during lessons (I since found out she’d told another boy he “swam ok for a fat kid” so maybe she wasn’t the best choice for a child’s instructor).

Swimming is one of the few exercises that doesn't cause a kid with arthritis much pain- the water cushions the joints and keeps impact to a minimum. It's also great for overall fitness, so I can't tell you how disappointing and frustrating that whole scenario really was.

We still let the kids go in the water where possible but I figured they needed a little stroke correction to keep them in the swim of things. And so a few weeks ago I signed the kids up (now aged 7 and 5 respectively) for a refresher course at different centre.

After a quick assessment, both children were put in the same lane for the half-hour lessons.

While I expected our son to have a little trouble getting his arm over his head for the freestyle stroke because of the JIA in his shoulder, he manages to get along quite fine, albeit a little slowly at times. (He does tire easily though and still manages to come out a glowing shade of red, despite the coolness of the pool.)

Our daughter, on the other hand, swims like a flea in a blender.

It’s hilarious to watch: one arm goes up and she darn near does a sideways somersault as she turns to swing the other arm…while the legs are churning up such a wake, you’d swear a 200hp powerboat was passing by. (It’s like having your own Jacuzzi without the motor!)

I swear, if the instructor didn’t keep a helping hand on her as they made their way along the lane, she’d be right back where she started (covering the whole pool in the process).

And don’t think just because you’re sitting on the side of the pool that you’re safe from the spray. No way.

My daughter can send out enough water to saturate the entire row of parents innocently watching their water babies. I try not to make eye contact now, ‘cause there’s only so many times you can say “Sorry”. (And it's really hard to sound sincere when you're laughing.)

In fact I’m almost inclined to pretend that particular child belongs to someone else entirely and just join the chorus of “tsk”ing (in shades of amusement and bemusement) that seems to follow my daughter’s progress across the pool. But where's the fun in that?

Besides, it sure is refreshing on a hot day!

So with only 7 more lessons ‘til the term is over, I’m banking on it that this instructor is making as big an impression on my children and there’ll be no need for any more of this learn-to-swim stuff, at least until this current crop of participants and their parents has moved into the bigger pool.

Either that or hope the budget stretches to a private session instead. Oh and bring the wet weather gear with me just in case.

Jx
©2009

NOTE: To download a whole lot of free Fact Sheets about water safety (in a number of languages), visit The Royal Life Saving Society - Australia website here. And to find an AUSTSWIM course near you, start here.

Handy Man

There’s a lot in this world we take for granted.

Like the fact that there’ll always be milk in the fridge, the TV will turn on when you press the remote, there’s still enough fuel in the car to get you to the service station, and no matter what else, you get to grab life with both hands.

Unfortunately I have learned that that last one isn’t always the case (oh and in our house, the first one also depends on who had the last cuppa).

Take my son for example. Due to the damage done by Juvenile Arthritis, he has had the use of both of his hands for a mere two weeks since March this year.

Yep, just fourteen days out of almost 6 months.

And boy, doesn’t it make a difference to your life.

You expect to lend a helping hand to your children when they are little and haven’t quite grasped the concept of hand-eye coordination. It’s a given that you’ll be the one wiping their bottoms, holding the spoon, and doing up the buttons and bows.

But there comes a time when kids either don’t want or don’t need their parents to be doing those sorts of things for them.

Independence is a big thing to a little person.

So imagine feeling like you can’t get a grip on what’s going on around you, literally.

It’s something that my son has to deal with on a daily basis. By default, so do I.

Instead of the usual and efficient school day routine we have managed to get going: I make the kids’ breakfast then move onto getting lunches together before laying out the school clothes ready for them to get dressed while I do the shower thing myself … for the past 5 months I have had to stop and sit and spoon the cereal for my son, make the swap from pjs to uniform, and wipe anything that needs it along the way. Some days we’re lucky to make it to school before the bell, and then it’s up to me to carry the bag to the classroom.

At the other end of the day, while I can usually have the dinner cooking while the kids take a bath, and have them come to the table ready dressed… I have burnt countless pieces of meat, let numerous saucepans boil dry, and totally forgot the side vegies altogether more often than not, while I move from kitchen to bathroom to bedroom and back, helping my little boy. (And I’m sure the neighbours are used to being serenaded by the sound of our smoke detector.)

But do I begrudge the extra effort I must make to pick up the shortfall of a child without two hands in full working order?

How could I?

Not when I get to sit with my son and daughter for nearly every meal, happily avoid the splashes amidst the laughter of bathtime, and listen to the childish chatter as I get up close and personal yet again doing tasks that most of us simply do for ourselves without another thought.

I have plenty of opportunities to count the freckles on his face, savour the sweet sound of his voice, enjoy the feel of his little hand in mine as we walk to another appointment, and take every chance I get to take some more mental photographs of my darling little man who will be too big too soon.

How many mothers of 7 year old boys get to do that?

And so, on one hand, while it breaks my heart to watch my child struggle with things that we take for granted every day; on the other hand, I get to spend precious time with my son that the average mum misses out on once her offspring decide they don’t need her so much anymore.

And just quietly, that’s a pretty handy thing to get you through the day.

Jx©
2009

Our Bitter Battle

For more than three years, nearly four in fact, I have fought with my son.

And yes, at times it has turned physical.

Those were the times I have had to forcibly restrain my child, using every ounce of strength that I could conjure up inside myself, to carefully hold him down and stop him causing bodily harm to himself or others. Sometimes I have failed to do so- and we both have the scars to prove it.

My son is four years old.

And our daily battle is over Arthritis.

In the more than three years since my son was diagnosed with Juvenile Idiopathic Arthritis, I have had to put him through hell in a diabolic “damned if I do, damned if I don’t” scenario.

Starting with making him endure countless blood tests that turned my once-robust bouncing baby boy into a human pincushion, from the age of just 7 months.

Throughout all the x-rays, bone scans, MRIs, aspirates, injections, twilight sleeps and general anaesthetics.

During the prodding and poking and castings and fittings by physiotherapists, occupational therapists, and orthotists.

Amidst the stretches and exercises of the hydrotherapy pool.

Beyond the examinations by Paediatric Rheumatologists, ophthalmologists, orthopaedic surgeons, geneticists, dental technicians, dietitians, and other clinicians.

And in and out of every single day, with medications, limitations, and frustrations.

For almost four years- nearly an entire lifetime for my son- I have had to wrestle with my precious child, and plead, beg, cajole, and convince him to take supplements that counteract or contribute to the drugs that I have no choice but to pump into his little body.

I have had to coerce him into wearing splints, bandages, and orthotics designed to straighten and strengthen his little limbs.

I have had to force him to take the extra medicines needed when he falls prey to yet another illness, this a result of suppressing his immune system in order to combat his own body’s auto-immune attack.

I have had to hold him steady while casts are put on to treat fractures that happen all too easily while his little bones fight to retain precious protective calcium. Then reassure him as they use all manner of tools to take the plaster off again.

I have had to wrap my arms and legs around his, and restrain his head and body during blood draws or eye drops that leave us both crying and utterly exhausted.

I have had to inflict untold torture upon myself as well as my child, as I inject medicine into a tiny little tummy that barely has enough fat for a needle to find its mark.

And I have to tell myself that I must be so cruel only to be the kind of mother who would do anything she can to rescue her child from this bitter battle.

The cruelest part of all is watching my son, my little man, my big boy, my baby, my miracle- adopt it all and adapt so well to these awful demands that are placed upon him by both Mother Nature, and his own mum.

He knows no other way.

It has been his life since almost the start of it; and it is now simply normal for us to go to such abnormal lengths to fight a perceived “rare” childhood condition that is far too common in children.

My son is the 1 child in every 250 thought to have this supposed "old people's" disease. He is the 1 child who could be in any school or suburb in Australia who looks well enough on the outside, giving no indication at all of the turmoil within.

How do I fight ignorant beliefs and explain that Arthritis does indeed strike our innocents and counts the very young amongst its ranks? It can hold them hostage for life.

How can I explain that it is his own body that is hurting him? As with every auto-immune disease, the "good soldier" cells meant to protect my son have instead turned their troops against him. To stop their approach, we must bring out a barrage of “big guns” to suppress their attack, in turn weakening his defenses and depleting his reserves even further.

It is a battle plan no commander would ever want to deploy.

Yet like any commandant, I must weigh up the risks and losses against any ground we could possibly gain. We simply must be prepared to fight this unseen enemy to the bitter end. I must stand stoically on the front line alongside my entire family, as together we face a foe that it supposed to be a friend.

It is indeed cruel.

To see my son give his toys 'blood tests' or 'tablets'- then give them a kiss for being so brave.

To hear my son reciting doctors’ name or various medical procedures, with varying degrees of pleasure.

To feel my son wriggling and writhing in angst and anger as he is put through even more pain in the name of progress.


To know that my son still loves me unconditionally for being there every time.


I don’t know if that hurts me or helps me the most.


But it does inspire me to get back up and fight another day.

Jx
©2006

274 messages, 127 unread

...that's what's awaiting me in a little folder I have labelled "Deal With Later".

Even those with basic maths skills (and even without the aid of a calculator in this day and age!) can see that though I may appear to have 'read' more than half of the emails in the aforementioned folder, there's a fair whack of cyber stuff I am seriously procrastinating Dealing With (I've put off even looking at it, for crying out loud)!

So what sort of things am I planning to Deal With Later?

Oh, you know, the usual online catalogues, internet surveys, and you-beaut special offers, but mostly news articles about the chronic condition that around 1 in 250 Aussie kids live with on a daily basis.

I run a support group which has recently been accused of providing "too much" support by way of information about the disease and its treatment; and therefore "scaring" people!

To me, Information is Power. Sometimes, what you do know can't hurt you.

But to some it's somewhere in the "I don't wanna know" category (kinda like the fact that during the course of our life, each of us will inadvertently swallow 3 spiders whilst sleeping- Yum).

And so, with all the extra stresses surrounding our little family castle in recent months, I have had to pull up the drawbridge and leave others to raise their own shields against the onslaught of the unknown.

(Speaking metaphorically, you realise, 'cause if we had the kind of money to actually own a piece of valuable property like a castle, a lot of the recent extra stresses would become redundant. Mind you, I doubt that too many of the landed gentry in days of yore had access to the internet either, so never had to face this very predicament. *chuckles*)

I will Deal With it, of course. I have found that running and hiding is not my forté (for starters, I run like a girl- a very uncoordinated girl with no sense of direction- and either my boobs or my butt make it difficult to secret my entire body away at any given time). And so I will proof read and post any information that I think is relevant to those people who have come to rely on the support group, especially those who like to take control of the condition. I've just had to put it off until I could Deal With it.

Oddly enough, while they say "tomorrow never comes", I find Later is always lurking nearby.

And when it comes to email, nothing except a computer crash is gonna cut that pile down for me. But then you run the gauntlet of losing everything else too. (Oh yeah, had that happen and wasn't that a laugh?!)

Oh crap, my Inbox icon just lit up to say there's more mail arrived from the newsgroups.

Looks like Later got here a lot sooner than I planned. *sighs*

Well, nighty night, sleep tight, don't eat too many spiders tonight.

Jx
©2009

"Just a normal little boy"

My son wishes he was “just a normal little boy without arthritis.”

Well, we know what arthritis is- inflammation of the joints- right?

But how does one define “normal”?

The Australian Oxford Dictionary describes it as “conforming to standard, usual, regular, typical.”

But for my son- on a typical day it is normal to feel constant pain. It is normal for him to move more slowly than other kids, or to miss out on things altogether when he has trouble moving at all!

It is normal for my son to regularly take tablets, and medicines, and subcutaneous or intramuscular injections. Just like it is normal for him to have his standard blood tests every few weeks to make sure all the medications are working. It’s normal for my son to have eye checks, medical imaging, dental exams, physio, occupational and hydro therapy; to wear splints, orthotics, bandaids and bandages. It’s also quite usual for him to miss school for another trip to another specialist or another stay in hospital.

It is completely normal to do all of these things… because he has had arthritis since he was just a few months old, and he knows no other way.

…and yet… my son has had a whole new world of opportunity open up for him that a “normal little boy without arthritis” might never know!

He’s had days and weekends away at places and events that only ‘special children’ get to go on. He’s met celebrities, been on television, radio, in newspapers, magazines and the internet. He’s been given gifts that we as parents could never hope to afford.

He’s been able to wish upon a star, and fly halfway across this planet!

He’s made some wonderful friends, seen some truly amazing animals, and done things that most of the kids at school will never get to do.

But he would swap it all in a heartbeat- be glad to never know any of it- just to be “a normal little boy without arthritis”.

And I would do anything to make his arthritis go away.

But I can’t.

So I do what I can.

I’m there for every appointment, learn about every new treatment, and help make those around him aware of his strengths, and the challenges he faces.

I’ve been his voice from before he could talk, and spoken out for him and all other children living with a so-called “old person’s” disease.

And when all else fails, I have my arms ready to hold him. After all, that’s what mums normally do, isn’t it?


Do I feel sorrow, or anger, or frustration, or even guilt, that I don’t have “a normal little boy without arthritis”?

Why yes I do.

Do I wish that the doctors could tell me if or when I might ever have one?

Absolutely.


But do I thank God every day for the miracle that is my son; the resilient, strong, clever, confident, caring little boy that we have been blessed with and are lucky to have in our lives?

Without a doubt.


And would I swap him, for some other “normal” little boy?


Not for one moment.


If this is normal- to have arthritis in our lives- then I’m in it for the long haul right alongside my son. And together we’ll take the downs- and the ups- along the way.

Besides, what is “normal” anyway?

Jx
©30 April 2009

Mum's the Word

My mother has decided to live for another 20 years, “if it’s not a burden on anyone.”

It’s a funny thing to say, don’t you think?

But it’s also got me thinking about what life has been like for her over the past 70 or so years she’s already been around.

Born 'between the wars' she has certainly seen a lot of changes in this war-torn world. It hasn’t always been easy, that’s for sure.

But I wonder if we make it harder for ourselves in this day and age. We certainly seem to.

As I struggle through another day with my two genetic offerings to humanity in a 3BR home, I shake my head at just how my grandmother coped with 10 people under the one roof, with only two bedrooms! (There was an addition as the additions came along, but that only took the bedrooms up to a grand total of 4!!)

And as we seem to barely survive on one main income, I marvel at how my grandfather provided for his family ‘in the olden days’. He was but a worker in a saw mill, so there wasn’t any golden handshake awaiting him on retirement.

Fast forward a few years and I really wonder how my mum raised three daughters on a pension, with no sort of support from my father (– oh yes this was before the new legislation that gives the Child Support Agency the power to pursue non-paying parents). Yet she paid off the house, put us through private school, and we never went hungry, really. Sure, we got all excited about the Vinnies’ hamper at Christmastime, but our clothes were always clean and usually fit us (except when we were going through the 80s when everything was BIG!).

Our mother managed to get us to school, and church, and sport, and shopping, and social outings without the use of a car. Whereas I’ve felt absolutely stranded with the recent troubles mine’s been giving me.

And mum kept us relatively healthy too, considering her own challenges (bilateral breast cancer, degenerative disc disease, emphysema, asthma, macular degeneration, IBS, just some of the biggies). Whereas I'm almost in despair when one of my little loved ones brings home yet another lurgy from school (I can cope with the big JIA ok though, funnily enough).

I guess not having much means you don’t want much, and mum’s always been a simple sort of lady when it comes to material possessions. Oh she likes a little bit of 'bling' and she was rapt when she finally got the house painted and carpeted for the first time in 30+ years (after we’d all moved out, of course; and it appears I’m aiming for the same timeline, LOL) … but through it all, she’s the one who likes to keep the good stuff for visitors or special occasions, and is almost embarrassed by our shows of affection come Christmas and birthday (like today- Happy Birthday Mum!)

Compare this with a world of ‘Generation Y’ers who expect a 10% pay rise despite this current global financial crisis (did you see that in the news recently?) and who simply cannot operate without the latest iphone, ipod, i30, and i-anything-else I’ve missed. Even we 'Gen X' crew take a lot for granted.

OK, so sure mum sometimes gets herself in trouble with using out-dated phrases in these modern times (like telling the milkman my sister was knocked up after a hard day on the job!), and sure she is yet to grasp the concept that a mobile phone works much better if you actually take it with you.

But if living for 7 decades on this particular planet gives one the same dignity and sense of humour that my mum possesses, then long live us all I say!

It has crossed my mind how I’ll go when mum goes. We’ve had occasion to reflect on it when her health has been more than a bit shabby. And I admit to being really worried about how my kids will take the news when Nanny’s not here anymore.

So if the old girl decides to hang around for another 20 years, I don’t think that will be a burden at all. In fact, I wouldn’t even mind if she stretched it out long enough to get that telegram from The Queen (provided Lizzy can hang out ‘til then too).

Jx
©29 May 2009

Air Apparent

I knew I should’ve changed my socks.

But at 6.45am on a public holiday, one can be forgiven for not thinking straight. Or at least for not planning any further ahead than a cuppa coffee for the trip to the airport, at any rate.

My boss was a little early in collecting me, which was quite fine as I was ready and waiting, just filling in time by giving my kids a couple more cuddles to stock us all up for the 3 days of absences on the way.

My bag was packed, and off we went to Williamtown.

At least the trip to the airstrip went smoothly.

We check in, collect our boarding passes and head for the gate (sadly, my borrowed carry-on could not be carried on; a tad over a kilo overweight and a smidge too wide).

Now, you gotta love the newly-upgraded secure status of these places; it’s reassuring for travellers that there’s but a slim chance of anything untoward happening whilst you’re en route to your destination. But I really am starting to suspect that I have a sign on my forehead (visible only to airport staff) that says “Pick me for the full security routine”.

I had my first inkling of it when I went to the USA for a conference on Juvenile Arthritis in 2007 with my small son in tow. Without fail, every time we arrived at a checkpoint, I was the lucky lucky traveller they ‘randomly selected’ to check their luggage, their handbag, even their body! I actually asked the rather large african-american lady that was scraping her fingernails along the soles of my bare feet at LAX, “What is it, exactly, that you think I am hiding there?” Obviously, they’re not big on teaching small-talk at airport security school.

Back to this trip; we approach the gate and duly start to empty our pockets and place our handbags on the conveyor belt to go through screening:

Ding ding ding ding!

“Step back please, and remove your belt Ma’am”

“Sure, but I gotta tell you, if I do that, my pants will fall down!” (Yes, in a bid to be as comfy as possible for travel I had chosen my ‘fat pants’. My bad.)

So I step through the archway again:

Ding ding ding ding!

“Step back please ma’am, and remove your boots.”

“Oh good grief, at this stage I will be standing in my smalls- unless of course the underwire sets the damn thing off again!”

To which the security guy says, “My day’s getting better all the time!” (Seems Aussie security staff have a sense of humour, at least.)

Thankfully no more bells and whistles, but there I was collecting my gear, hopping on one foot holding my pants up with one hand, while trying to restore my clothing and at least some shred of dignity. And there you have it, my bright purple knee highs had a hole!

Well at least I provided some early morning entertainment for travellers of not only Jetstar, but Virgin Blue too.

Now, settled into my window seat awaiting take off, I tune into the hostie’s demonstration of what to do “in the unlikely event of an emergency” and follow along on the safety card from the pocket in front; I can’t help wondering why in the picture, the air stewards watching passengers assuming the ‘brace’ position, are smiling! They obviously know something we don’t. And I also reflect on the silly fact that if a lady like me tried bracing by placing one's generous chest on one's legs as illustrated, there’s no way I’m ever going to be in the correct “head down” position required in such drastic circumstances (thanks for the mammaries)! In my opinion, that’s right up there with printing those photo offers on the sick bags. (Hopefully you get to use it for the former before the latter.)

I amuse myself in this manner for a little while until the scenery and a touch of turbulence grabbed my attention. As I was staring out the window trying to identify the landscape below, and pondering the fact that clouds are bumpy…the passenger in front of me lets rip with a gaseous cloud of their own. It really made me think I’d be reaching for the oxygen mask after all, or at the very least the surgical face mask I packed in preparation for our trip to ‘Swine Flu Capital’.

Thankfully, the rest of the journey passed in relative peace. And all went well at Tullamarine, until it was time to head home again.

Despite the fact that any number of other passengers were all but bearing their entire life’s belongings as they boarded the plane for the return journey, the girl we got on the check-in desk was playing by the rules and weighed and questioned everything our little group was carrying, to the point where when we finally were checked in, we headed to Gate 6 via the bar.

And after sitting at the terminal for half an hour longer (waiting for errant passengers), the plane finally started taxiing towards the runway taking us to our loved ones back home.

The night flight was fairly uneventful (except for a rather nervous passenger sitting next to me), but it was only fitting that when we arrived at Newcastle airport, and watched and waited as the baggage carousel did its thing, we realised that we had fallen prey to yet another cliché of air travel- and at least one of our bags got a longer holiday than we did! (Of course it had been checked through in my name- the curse of the random passenger strikes again!)

As I write this, I’m still waiting to hear of its final destination.

But on the up side, I am happy to report that I was prepared for the sock-hopping-through-security this time; no toes peeping through the hose!

Jx
©2009

Hell at the Hospital (or, Don't Look at the Broccoli)

Ever have one of those days?

You know the ones I'm talking about- the dog barks all night, you can't sleep for coughing, no bread for breakfast, the car won't start first go, a not-so-friendly red Reminder notice in the mail, technology malfunctions at work, you fight with your hubby, the kids fight with each other, reeeallly bad hair day, and then ... uncooperative vegies.

Yep, after the hell of the last few days/weeks/months, I am faced with floppy broccoli.

Call it the straw that broke the camel's back (Do camels eat broccoli? Or straw for that matter?) but it is enough to make me squeeeeze the last few drops out of the red wine bottle, and want to run away from the world for a while.

Here's the Reader's Digest™ condensed version for you:

My son had to go back to hospital (second time in just over a month) for some pretty aggressive treatment for his Juvenile Arthritis. Now, at age 7, and having had JIA since he was about 7 months of age (and being under anaesthetic 7 times now), he is, understandably- OVER it. So he resisted- with extreme prejudice- the latest lot of aspirations and injections.

And so, having had to leave home a whole day ahead of schedule to catch a train (a load of laughs with a wheelchair) then beg a bed and a ride with a friend because my car is still M.I.A., it was one unhappy little boy that was being prepped for anaesthetic. So I had to hold him while they put the numbing cream on, then hold him down again while they cannulated him, and then I had to hold the gas mask over his face to put him to sleep because he flat out refused to let the doctor or nurse do it. Oh, and then gently hold him down again as he was coming out of it (like a junkie on a bad trip).

In the days after he has been alternating between crying and cranky due to the pain of having needles stuck into his swollen joints (and quite frankly, can you blame him?) and all he wanted for tea was fish fingers and broccoli (it's his favourite vegetable, go figure).

So because My Beloved has taken himself off to bed, I am on dinner duty again (do mums ever really get a day off?) and I pull the vegies out of the fridge. You got it, floppy broccoli.

I pad it out with the frozen veg I keep on hand in case of emergency (like, now!) cross my fingers and hope for the best. With luck, he won't notice, I can put the kids to bed at a reasonable time, and get back to the business of draining the dregs of the red.

Cheers!

Jx

©6 May 2009

Life's an adventure...?

Seems I've got a theme going here, and the last couple of days tie in nicely. The difference between being a kid and being an adult, I mean.

As much as I don't like to use those words- my son is sick. He has Juvenile Arthritis, has had since he was but a wee bub. It sure adds a rollercoaster dimension to the whole family life thing.

Long story short-ish: he had to have his tonsils/adenoids out due to repeated infection due to being immunosuppressed due to JIA. He had to go off most of his medications prior to the surgery to reduce post-operative risks. As expected, he flared up in a number of joints. His right wrist has not recovered. But at least he can walk again! Yay!

So, after weeks of being unable to care for himself as best a 6 y.o. can (eating, dressing, even toileting) and after many 'phone calls trying to get someone to look at him again (including a bum-steer by a GP who admitted she didn't know anything about juvenile arthritis and sent him for an x-ray suspecting another fracture) we were called by the Paed Rheumy to get to Sydney as quick as we could. (Normally, just an hour and half's trip south.)

Now the fun part really begins!

I had to leave work (casual, because I can't do fulltime due to the extent of care needed) dash home, get the kids ready, and 'convince' them to go. My Beloved didn't come because he was on night shift and needed sleep. We head down the ol' F3 freeway and en route hear of a fatal truck accident blocking the other side of the road. My son's first words were "I bet he's someone's daddy." (My hubby drives trucks.) Such wisdom in one so young.

Anyway, half an hour ahead of the emergency appointment and just 19.7 km (according to my trusty TomTom) from our destination, my car loses power and I do some precision driving to weave through the traffic to get it to the verge- nowhere near an emergency phone, and barely enough room alongside the rockface to pull over (scary stuff).

The kids are wondering why I've stopped there, but are still content at that stage to watch their DVD player (thank God for Teenage Mutant Ninja Turtles®).

After waiting nearly an hour for a tow truck, we got the rudest, most chauvinistic (and I'm sorry to say this: the ugliest) driver in the known universe. I won't go into all the details here, but I'm sure ladies would appreciate comments like "Shouldn'a done a trip with no fuel in the car" (that wasn't the problem actually) and "You can wear the ticket if ya get one", and the ever-so-thoughtful "What's wrong with your kid?" I can only say, I'm sure the man's mother loves him.

After being told my son's got to go back into hospital again, :-( we wait another half hour for the roadside assistance guy to get the car started again. Thankfully, he was lovely!

OK, so now it's late, getting dark, starting to rain, the F3 northbound is still blocked for hours, and I have a dodgy car. We arrange emergency accommodation and make the trip home 24 hours after we left, in heavy traffic, in the rain, driving very cautiously in case the car breaks down again.

So for the kids: what an adventure- they got a ride in a tow truck, got plenty of DVD time, got snake lollies from the doctor and funky new toothbrushes from the hospital, slept in 'motel' beds, AND had Maccas not only for dinner but for breakfast too!! Awesome!!!

The grown-up, on the other hand, needed an aspirin and a nice lie down.

Jx
©2009