19 May 2012

When Things Go Wrong

I'm a design girl, myself.  As in . . . Intelligent Design.  I believe God is a whole lot more creative and brilliant than we could ever hope to be . . . and our human bodies are just more proof of it. 

What an amazing machine He made for us!  We run and jump and see and hear!  Our thumbs oppose!  Our toes wiggle!  Our skin sweats! (okay, maybe not where YOU live . . . but here, our pores are at it ALL day . . . and night!)

But what happens when something goes wrong?  When one cog rebells from the rest of the wheel?  When a rogue system deviates from the plan?

For most of the world, the best personification of this is Cancer.  But this week, in Niger, it was Osteogenesis Imperfecta.


Osteogenesis Imperfecta.

To they layman, that'd be Brittle Bones.

It's a genetic condition causing a defect in the structure of bone tissue due to a breakdown in something having to do with the protein makeup of collagen.  In turn, it results in (very) weak bones that break easily, long-bones that bow into curves, significantly stunted growth, and sometimes scoliosis and deafness.
BigSis tries hard to keep her giggles inside.   

Most of us pass our entire day forgetting that we even HAVE bone, let alone what would happen if they stopped working correctly.

But this week, I met two gorgeous sisters that got me marveling at how miraculous our bodies are . . . and the devastating results when something simple goes wrong.

My friend A. is a physio from Oz.  She's been laughing at me  . . . I mean . . . with me since we were classmates in France.  But thankfully my language disasters and long history of misadventures haven't (too greatly) effected her opinion of me as a clinician . . . and she extended the invitation that I join her on a home-visit to see if I had any suggestions to help guide her treatment sessions . . . since I was in town.

When BigSis and LittleSis smile, the sun shines brighter!

Their sweet little faces radiated as A. entered the family compound.  Her play time  . . . I mean . . . therapy sessions are clearly a highlight of their little week!  We were greeted with sweet 'BONJOURS!' and giggles.

LittleSis wasn't well, so it was decided that she wouldn't be able to play . . . uh . . . work.  But that gave us more time with BigSis . . . who is the more severely impaired of the sisters.
Her smile is MUCH bigger when her photo isn't
being taken!

She was lifted onto the large mat where we would play . . . I mean . . . do therapy.  Her face, head and trunk are nearly-average size for her age . . . but her arms and legs are severely shortened.

BigSis was born with fractures.  Only, at the time, no one knew.  She has spent her entire short life living with broken bones . . . and now, both of her upper arms are in pieces.  Literally.  The humerus on her right side was broken mid-shaft and never healed.  On the left, the humerus is now in three pieces.  Both elbows are fused, which means she can't straighten or bend them.  Instead, she relies on the false-joint(s) of her humeri to flex and extend for her.

I watched as her upper arms distorted and changed from 'L's to 'S's . . . arms shouldn't bend like that.

Because of some dysfunctional amino-acids that she doesn't even know exist, BigSis will never be able to walk.

There's a reason God made our bones to be strong and solid.  There's a reason He gave us joints where we have them.  There's a reason He fashioned our bodies to work in a certain way.

Hard at work.  (the lowest crease in her arm is her fused elbow joint)
Our bones are the structure that everything else anchors on . . . our bones create the frame of our bodies.  Without them, we could not bear weight to walk . . . our muscles would have no attachments in order to contract.  Our heart and lungs, spinal cord and brain would be exposed to great threats.  Our role as 'doing-beings' would be greatly hindered.

Hindered, yes . . . but impossible, no!

In the West, individuals living with Osteogenesis Imperfect are doing just that . . . Living!  They have highly technical wheelchairs and are allowed access to education.  They live in a world where the disabled have rights and advocates and access.

But here, these precious sisters have none of that.  They cannot claim a right to an education.  They have no wheel chairs, no curb-cuts, no elevators, no reserved parking.  And their advocates' voices have been answered with 'there's nothing anyone can do for them.'

LittleSis does some arm exercises.
It is hard not to think 'If only they had been born with normal bones!' or 'If only they had been born somewhere else!'

But we don't live in an If-Only world.  We live in a world where there is disease . . . where there is injustice . . . where things do go wrong.  

And at the end of the day, I have to step back and accept that we cannot give BigSis and LittleSis and all the other Nigeriens that are disabled what we have in the West.  I have to be okay with that.  But that doesn't mean we cannot help . . . because we CAN!  

In Niger the disabled don't have fancy equipment . . . or advanced adaptive technology.  But they have an overabundance of creativity, determination, and a will to never give up.

And while these little girls have made me step back in awe at the design of the human body, it is the Nigerien people that leave me humbled by the gift of humanity that we have all been given!

1 comment:

Mamastouff said...

Once again you remind me that daily I need to thank our God for the gifts He gives and ask how I may show His love to others...never taking anything for granted...keep writing and photographing , I will keep praying for you and the others at Galmi. Can't wait to see you face to face!