"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