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, February 21, 2011

The Weekend in Pictures : Sam's first EVER swim

We've been waiting F.O.R.E.V.E.R to try Sam out in the pool but, although it's certainly been hot enough every day, the wind is always too hectic for us to give it a go. Luckily there was a fairly mild breeze yesterday so it seemed like the perfect timing. Sam was also lucky enough to have Janke, Uncle Christo, Aunty Henriette, Aunty Cammy and Uncle Damien sharing in this exciting new adventure with him.

 Sam and Daddy, Janke and her Pappa (Christo)

 Janke showing Sam how it's done - you just jump on in!

 Never a wasted opportunity for some hand-clapping!

 Janke and her Pappa

Okay, so I've heard of downscaling, but how are you and I both going to fit in here, Cammy?
And we could at least have got something with an engine!

 Sam was at first a little scared of being in his little carboat....

But soon relaxed a little...

 and was even brave enough to start playing in the water.

 Ooohhh...that darn sun! Where's my shades, Mom?

 Aunty Cammy and Uncle Damien

And, we finally managed to get some pics of Sam pulling himself up on the couch. Unfortunately, I couldn't start snapping straight away from him moving out of his sitting position because sometimes he looks like he'll fall over any second, so have to stay close in case I have to catch him. But at least got these....

 Shimmy one knee a little closer....

 Then the other....

 Lean a little this way....

 Straighten up a bit...

And I'm there.

Note the Barbie doll lying on the couch? An experiment to see if we can distract Sam with rather pulling a doll's hair instead of ours...still working on it :)


  1. Sam, I love to swim underwater. You should try it! Natalie

  2. it looks like such a great time i cant wiat for the winter to be over :)
    i was wondering how you got him to start clapping Jesus knows how to put his hands together but hates to clap he rather hold my hands and make me clap.. any ideas?

  3. Angelica, it took absolutely forever to get Sam to eventually clap his hands on his own. He used to do the exact same thing as Jesus, in fact, he does that with everything, eg. he loves knocking on doors, counters, etc. but he doesn't like doing the knocking he takes our hands and makes us knock. So, it took lots of singing and watching Barney's Clap Clap song like 20/30 times each and every day. We completely unindated him with clapping and we'd almost given up when one day, he just did it. But the poor guy was under so much pressure that he's even clapped hands in his sleep already...hee hee! I am sure Jesus is going to be doing the same thing any day now!!! Don't forget to take pics :)

  4. I Want a car boat!!! Those were great pictures Nicky. Looks like he had fun. he's come a long, long way. Keep smurfing!!!