Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Sunday, June 18, 2017

As the parent of a differently-abled child... hard should you push? How sure can you be that you're allowing enough consideration for health, physiological and emotional wellbeing. How sure can you be that you're not allowing too much consideration? And on which one of those would you most prefer to err?

A few years ago (and by "few" I mean ten or so...and that's where I'm leaving it), I travelled a fair distance to work each morning making my way into the CBD via either bus or train. Because I cannot pinpoint the exact year, I cannot remember exactly which mode of transport is relevant to this story but as I am leaning towards 1996/1997 (yes, a little more than ten years maybe) I am inclined to believe it is the bus. Travelling what seemed to be the same route a few times, was a young man who appeared to be roughly the same age and whose constant companion was his remarkable guide dog. So many times I watched the intriguing pair navigate the busy streets along Cape Town's Foreshore and brave the city's public transport (which was a courageous enough task for even the sighted) and could not help but stare intensely at the young man, hoping for the slightest sign of sight because my heart broke a little each time I saw him, at the thought of his having to encounter such formidable challenges each and every day...alone.  While my memory is a little sketchy about the minor details (like whether we were travelling by bus or train, what with them being so similar and all) after all my "intense staring", it would be fair to say that I'd have recognised his face anywhere!

A week ago our NPO held a fundraising event and the guest speaker was a gentleman by the name of Hein Wagner - A blind man with vision. Hein, who now lives predominantly in Sweden with his lovely wife and daughter, hails from South Africa and had travelled to his country of birth alone to speak at our function. I had read his biography a hundred times by then, had copied it into several media documents...but had never thought to look at any pictures. Hein's lifetime accomplishments read like something out of an incredible feel-good movie. Few sighted men could achieve all that he has, so to say I was excited and very nearly intimidated to meet him would be fair. Hein entered the venue on the arm of a colleague and my heart stopped. Yes it had been about...ahem...ten years (give or take another ten) but that face was all too familiar. His presentation was profound! Amongst other things, Hein spoke about how grateful he was to his parents for insisting he learn to become independent, placing him in a boarding school for visually-impaired students 100km away at just five years old! While I have no plans to ship Sam off to boarding school (although this is a traditional punishment I have threatened all of my children with), Hein's message inspired me to rethink the way in which I approach Sam's challenges and, in turn, the attitude I instil within him to approach those challenges.

Having done several rounds with many of the obstacles Sam struggles with the most already, I thought it was worthwhile revisiting the more fundamental tasks which, although perhaps appearing "basic" to many, would make a significant difference to our daily lives. So first up was independent feeding - with the complex puzzle which makes up the lil flappy dude's brain, one of his trickiest challenges is fine and gross motor planning leaving eating independently as something we have not yet been able to master. This weekend seemed as good a time as any to try again...

Sam's movements lately seem to be hindered by an increasing amount of tremors and shakiness, but after a few more tries he really seemed to get the hang of manipulating the spoon which also seemed to ease the flow of his movements a little. A change in utensils (I foresee mountains of dirty dishes in my future while we figure this out) and Sam was not only more comfortable with the process, but was even scooping up stray food from his chin!

We will of course spend some time on this new goal before we move on to something else (and right now I can't even imagine what that something else would be) but, as with any form of progress for a child with specific needs, the joy of seeing how impressed Sam was with himself and the encouragement of what a little perseverance and motivation can do, was pretty darn awesome!

And so...did I ever find out if Hein is in fact the young man who I witnessed so many years ago? I'll never know!! My lacking self-confidence and social awkwardness prevented me from asking him outright, despite him being very friendly and approachable. I have considered indulging in some Facebook creeping (because once you've been an intense starer there's little else more inappropriate) to see if I might come across a photo of him at around twenty years of age but the thought of finding him with a short, trendy hairstyle then like he wears now as opposed to the long, almost shoulder-length bob I remember the young man having then, would be strangely disappointing. So, for now, I fancy the idea that Hein Wagner is in fact the blind, young man upon whom my senseless sorrow was wasted as while I thought he was out feeling overwhelmed and vulnerable, he was in fact out conquering and overcoming 💜

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