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