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, December 20, 2010

Tethered Cord Surgery : Day One

It is 12:02pm at the moment, here in the High Care Ward at Vincent Pallotti hospital and I have been out of theatre for just about an hour and a half. I vaguely, in my post-anaesthetised state, heard Prof F telling mom and dad just how well my surgery went and how the filum was released with a slight t-t-t-w-wang, so prof and my folks can rest assured that me having the surgery now was definitely the best thing for me.

Right now mom and the nurses are waiting for Dr S to come solve the puzzle of how, with me being down flat coupled with my reflux, we are going to get some milk and food into my tummy.

I can tell that mom and dad are super pleased that everything went so well, although with our awesome Prof, together with our wonderful Dr B, i really can't imagine what they had to be worried about. Prof has given me a local anaesthetic into the area surrounding the wound which should keep me painfree for another ten hours or so, after which dealing with my frustration at being so immobile together with whatever pain i am going to have becomes Mom's baby...pardon the pun.

For now i am going to sleep a little longer, comforting the folks with my precious snoring/"sleep humming".


  1. Yeah! I'm so glad everything went smoothly. Praying for a speedy recovery!

  2. Yeah Sam! I'm also glad everything went great! Hugs!

  3. Still praying for it to be over real soon and you can go home and recover.........lots of love and strength to Mom and Dad too