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, July 22, 2013

The crushing of spirits... a heartbreaking matter, isn't it. It can occur for a number of reasons...being made to feel worthless, inferior, different, inadequate, misunderstood...whatever. And whether it happens often or is a fleeting experience, it still hurts the same.
It can happen to anyone really...young, old, typical or differently-abled. As folks of differently-abled children, we tend to find ourselves more often than not grappling with society's general intolerance of different when our hearts' treasures are treated unkindly, perhaps even with a tinge of self-righteousness (my way is better), purely because they behave/communicate/function in a way that is, for them, the best possible way to cope and meet their challenges but not what their peers are familiar with.
And just as our kiddies adapt each to their unique journey, so do we as their folks, right? Some folks are empowered, filled with passion to change the world, out there advocating and shouting from the rooftops. Some are a little more subdued, are too filled with passion but simply to carry their family through each day without surrendering and struggle to merely see life passed the rooftops. Some stagger drunkedly (not literally) between the two. Are any of these the more appropriate/accepted/superior approach? Is there an appropriate/accepted/superior approach? If there is, please do point me in the direction of its creator as I desperately need to take notes.
And yet...every now and again, when and where you least expect it, a little innocent utterance happens. A comment beginning with "Well I personally don't believe this-and-this but instead prefer that-and-that" or something to the likes of such. Sometimes it's far more aggressive, unguarded disdain for a question posed on a forum, a link shared on a social network. Could it be? Is it AT ALL possible that sometimes, oh very very occasionally, us mature, adept and informed adults might too frolick a little in the pool of intolerance and hautiness? Oh, have no fear, my pedestal of self-righteousness has crumbled to the floor as I most certainly have allowed myself at times to think "That's not how I would have done it..."
I posted a pretty harsh comment on FB recently after a few of our RTS kiddo's found themselves victim to varying degrees of, well, discrimination. (Hey, when it's one of your own, the gloves come off!) But in hindsight wondered how challenging it must be for children to practice complete acceptance and open-mindedness if us as parents, leading our children by example, struggle sometimes too :)

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