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

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

"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

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