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, April 17, 2011

He just couldn't wait, could he?

Who couldn't wait?

Why, Sam of course!

Couldn't wait to do what?

Well, this........

And this....

Being rewarded with some love from Aunty Minnie Mouse and Uncle Damien.
Aaahh...I mean, Aunty Cammy!

Sam is officially O.F.F.I.C.I.A.L.L.Y crawling! It seems almost unreal - wow! I posted last week that, after his little exploratory crawl last Tuesday, I thought he might be crawling properly by his 2nd birthday in a month's time...but even though I said it, it was more of a wistful fantasy than something which could really become a reality. So we are sooooo incredibly proud of this little boy, still managing to haul in some milestones while struggling with his SID. WELL DONE SAMMY!

Sam also now has a lovely swing hanging from our ceiling. Our house, especially the living areas, is starting to look more and more like one massive daycare centre as opposed to a lounge/sitting room, etc. We've even toyed with the idea of just going the whole hog and removing all "big person" furniture and just Sammy-fying the place :) but then again, it could be the lack of sleep talking!!!


  1. NICKKKKKKKKKKYYYYYYYY That is just so brilliant. Your heart must be doing flick-flacks and somersaults every time he moves on all fours! Go Sam - what a joy to move independently!!! To go where you want, when you want!!! We are doing a big happy dance here for you!!!

  2. Look out world, here comes Sam! Sam the Conqueror!