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, September 26, 2011

You *have* to see it to believe it.....

For some time now, when Sam watches his Brainy Baby Numbers dvd, he will hold up which ever foam number they are speaking about at that moment. I have taken a video of this too, a while ago, but my near-hysterical exclamations of joy completely overpower the video so, in an attempt to preserve some element of self-respect, I decided not to post the video.

This afternoon while watching Sam carefully select his numbers I couldn't quite understand why, when he's done it correctly so many times before, he kept selecting the incorrect numbers. My first reaction was to try and correct him but it was only after the second "take" that I realised he was selecting his foam numbers, in the correct order of course, in advance before they actually appeared on the screen. My silence thereafter is a clear indication of how stunned I's a bit of a long video even though I did stop at number 5 (be sure to turn the volume up so you can hear which number is being counted on the dvd) :

To say that my little smurf blew me away today would be the understatement of the year...Brampies and I barely managed to control the tears when we began to fully comprehend the amazing blessing we'd experienced. How awesome is our God!!!!

1 comment:

  1. Wow Sam your are such a clever little chap.....just love the way he turns the number the right way round. Our God is indeed awesome and this miracle has come at the right time. We could not keep dry eyes either......Praise God