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

Daddy's Girl

So the circle of life continues.

The man partly responsible for bringing me into this world, is by all accounts about to leave it.

I don’t know this for a fact, as he left my world some 30-odd years ago, when I was about the same age my daughter is.

But I’m told that the same disease my mother was battling at the time he left, is attacking my father now.

See, another circle.

To be honest, I’m not sure what I’m expected to feel about it.

Sure, I feel bad that Cancer has reared its ugly head again- I don’t wish it on anyone.

Yes I am sorry that someone is suffering, with no brilliant prognosis this time.

True, there is concern that people dear to me are upset about it.

Of course I should be sad that someone I know is in pain.

But the whole what-am-I-going-to-do-my-dad-is-dying thing, well I just can’t come at.

Because - truth be told - I lost my father a long time ago; I’ve done my grieving already, aged 8.

A lady I know recently buried her dad with whom she had a…shall we say challenging relationship. Without breaching her privacy or her pain, it was a similar story: he left, didn’t have a lot to do with them, and time ran out before the break was properly healed.

Yet she had the bravery, and inner beauty, to speak a Eulogy for him. She revisited the good times and the bad, and bid him farewell the best way she could: with honesty and humour.

I wish I could say the same thing for the man I know as father.

If I do get to talk with him before he goes, I might say thank you for having me. After all, without his input I wouldn’t be here now.  And I might smile at a cherished memory or two that survived the fallout that befell our family. I would even wish him well for the next part of his journey.  But I cannot tell him I love him. (Nor do I loathe him, just for the record.)

And hopefully one day I can find the words to explain to my children why they never met their grandfather, for all his faults.

So all I can do is this: support my family as they support him, and pray that when the circle of life rolls around again, there is no break in the bond between my own offspring and me.

Daddy’s Little Girl (©1986)

daddy, aren’t i your little girl? aren’t i your ‘supa-kid’?

well, then, why did you leave me here, wondering what i did?

your clothes are gone, your cupboard’s bare, not much is left behind.

your crucifix stays on our wall, one thing left to remind.

please daddy, won’t you come back home? we all miss you so much.

my friends still have their daddies here- a real daddy to touch.

but daddy’s gone, he left me here, he didn’t want his child.

so now it’s just the 4 of us, one less reason to smile.

my daddy’s gone away, you see, he doesn’t really care.

‘cause when i cry his name at night i know he’s never there.

but daddy, i’ll grow up someday, i hope with no regrets-

but when you leave your little girl

the pain’s hard to forget.

Jx

©2011

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

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