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)

Monday, August 31, 2015

Potential Capped

Statistics vary considerably on the number of people in South Africa living with disabilities, but the estimation is somewhere right up there round the 3 million mark.  Of those 3 000 000 people, anywhere between 500 000 - 900 000 will go unschooled.
500 000 - 900 000
As in somewhere between half-a-million to almost ONE!MILLION! children will be robbed of their right to an education simply because the inclusion infrastructure in this country is as flawed as our ability to collect efficient stats. Urrrrgghhh!
"Ineducable"! (One of the words used to describe Samuel's prognosis when he was born) 
"Considered incapable of being educated..."  
Many of you have heard the following a million times over so feel free to skip to the next paragraph - this word ineducable...capable of stripping one of every ounce of hope you might manage to salvage for the future. A word that instantly became my personal demon, to the point that I became near-obsessed with doing everything in my power to expel it from our vocabulary. Numbers up to 20, all letters, colours, shapes mastered by the age of 3...applying counting skills, a signing vocab of near 200 words...capable of reading just as many words...all by the age of 5 and despite having three separate conditions affecting his brain. 
Yet, at just six years of age my son has been rendered ineducable...not because he does not possess the potential to learn, but because there are no facilities available to guide him towards that potential.  Schools for physically/neurally disabled kids? Yes! Schools for children with Autism? Yes! Special Needs Schools for children who are equally challenged by both? As scarce as hen's teeth! Mainstream schools which would consider accepting a child whose brain functions brilliantly but has not yet found the right "sync" with the rest of his body? You've got to be kidding!!!
It is beyond sad.  This kid, reading through his dictionary.... 
...this kid deserves to have his potential recognised and catered for, especially by a country shrieking daily about the horrendous crimes of discrimination.
Vent over xxx

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