Take a Break

We've learnt a very important lesson again this weekend. While most boys bounce, ours breaks.

You know how it is, around the age of 10 the male of our species gets a shot of testosterone in their system, and suddenly they are 10-foot-tall-and-bullet-proof.

They start getting into even more mischief than usual, playing hide & seek at bath or bed time (i.e. they hide, you reluctantly seek), some develop an intimate relationship with the principal's office, and more often than not engage mouth before putting brain into gear (some would argue that they never grow out of that one).

But hormones are not the only things with wings at this age; many a male has the sudden urge to fly ... on bicycles or skateboards, or off any height well above their own. If they're not careful (which, let's face it, is most of the time) they come back down to earth with a thud. 

My little man, though, came back with a crack.

It was simple enough: they were at a play centre, there was a jumping castle (AKA bouncy house), boys being boys got bored with jumping on the castle, so started jumping off it (totally against the rules and clearly signposted, but, well, these are 10 year old boys we're talking about).

While most of them made a safe landing, my son did not. And like I said, where others bounce, he broke.

Now I wasn't there (I was otherwise engaged at a funeral out of town) but I'm told that appropriate First Aid was applied, along with a mandatory rest period, before my boy hopped back up to play. Literally.

See, he has a mighty high pain threshold. A lifetime of juvenile arthritis has given him that. 

Unfortunately it's also given him brittle bones (years of steroids have leeched essential calcium), so no one thought he was that bad. Including the man of the moment.

Imagine my dismay after a day away farewelling a friend, to come home to news that our boy's left foot was "a bit" swollen, and sore. A bit?? By next morning when he hopped out of bed (again, literally) it was a football rather than a foot, and it was off to hospital we went. Exactly 9 years to the day after we first took him to Emergency with a swollen left foot!

See, it's not the first time he's fractured something. Third, actually, both prior breaks being arms (left*, and right), both from 'falling off' chairs (he had a little help both times, but that's another story).

Long story short, 3+ hours in Emergency, a few xrays later, we got the diagnosis of fractured Metatarsal #2 on the left foot, and suspected fracture of the Talus too. Terrific- like the scaphoids of before*, only the trickiest bone to diagnose, and slowest to heal.

After a decent amount of plaster cast and bandages (back slab only at this stage- for those playing along at home- due to excessive swelling of the football, er, foot), a quick lesson in using crutches, and a referral to the orthopaedic surgeon at the fracture clinic, home we go- with strict instructions for no walking whatsoever. 

Forget flying.

But because it's merely the latest challenge in a long line, and with more hormones on the horizon, our boy will bounce back.

Hopefully this time he won't break!

Jx

©2012

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

Angel's Wings

There’s a 12 year old girl on the other side of the world waiting for God to take her home.

I’ve never met her- or her mother for that matter- but my heart is breaking for them both.

As a parent, you never expect to outlive your children. It’s just not the way it’s supposed to be.

And as a mother, you simply never expect there to come a time when your child decides it’s time to stop fighting, and asks you let her go.

But as I write this, that’s exactly what’s happening in a home and a hospital at the opposite end of the earth to where I sit.

You know, I can feel their sorrow from here.

Miss M is 12. She has been in pain her entire life. She was born with Osteogenesis Imperfecta and Cerebral Palsy. She also has Juvenile Arthritis (a disease we know only too well and the reason I ‘know’ this family) along with the Uveitis that can come with it. Miss M has also suffered Primary Immune Deficiency and Disseminated Histoplasmosis, Diabetes and Behçet's Disease. Plus other things too horrible to imagine.

If there was a lottery for drawing diseases, this little girl had the winning ticket.

She has had too many broken bones and countless operations, tried more medications than most of us combined, and spent too much time at her home away from home- the children’s hospital.

Now she wants to go to her ultimate home in Heaven.

Not many adults I know could take what this young lady has, and make the decision she has.

Practically no one could do it with the same grace and maturity.

And it is a decision I would wish for no child to have to make, nor for any parent to have to accept.

But after too many days of terrible pain, Miss M has asked the doctors to stop her treatment, and let her go.

So now we are taking what time we have to say goodbye to an angel, and wish her well as she finally gets her wings.

It’s often said that funerals are for the living. The departed don’t know what kind of fuss is being made about them, it’s more relief for the grief for the ones who are left behind.

It’s also been said that sometimes the ones we love the most feel they need permission to leave us, they feel they are being selfish by wanting to be free of the pain and find some promised peace.

I know when my much-loved Nana was close to her time (after a very-well lived nearly 94 years, mind you) and when our beloved Aunts were battling cancer, the family felt we needed to say it was ok for them to stop fighting; while we would certainly be sad to see them go, it was worse to see them suffer. Oddly enough (or perhaps not, depending on what you believe) once we said our goodbyes and thanked them for being part of our lives, each one went quickly and peacefully. Still cried our eyes out at the funerals, but our hearts weren’t quite so heavy knowing that they didn’t hurt any more.

And 10 years after a favourite cousin was killed, I know another Aunt still suffers for having to bury her only son, much too young at 27. I sure miss Mick still.

I can only guess how the family feels of this brave little girl who has asked to be set free.

So now we wait for word that another little angel has taken flight, and instead try to imagine how happy she will be to finally be free from the pain that has plagued her earthly existence. To think of her soaring high and happy as she watches over her family while she waits for them to join her.

In the meantime, I am hugging my kids a little tighter, and a whole lot more often than is usually possible in the day-to-day scheme of things. And I’m making the time to pause what I’m doing whenever they want me, no matter how important all that other stuff can seem.

Heaven forbid I ever have to say goodbye to them.

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.

"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