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, January 31, 2011

Why so excited Mom?

So today I got my very first, real, "childhood injury" (and, for once, not caused by some or other medical procedure or surgery). It was sooooooooooooooo sore, I sobbed my precious little heart out so badly that I almost threw up all over Mom...which she woulda kinda deserved because I never imagined a mom could get so excited about seeing her baby get hurt! Sure, after like five minutes she eventually remembered poor lil' ol' me and managed to tear herself away from telling Brampies that I had just tried to stand up in my high chair, to try and comfort me...okay, maybe it was more like five SECONDS...or maybe just two, but was really sore. And whose silly idea was it anyway to put a tray on the high chair with an underneath sharp enough to graze a tiny little thigh? Or rather, was it Mom being silly enough not to strap me in, thinking that I am nowhere near trying out new, adventurous activities?

Talking about silly...and Mom....she insisted on taking a photo of my already-disappearing graze. It really is there if you look hard enough...and perhaps with the help of a microscope :)   

Ever seen the movie August Rush? It's an all-time favourite in this house, especially for my Mom, Luke and Meghan. Seeing as I love music so much  (although I have been banned from the keyboard because apparently trying to either play with my feet or completely kick the keyboard off the table is a problem around here) I thought I'd incorporate a bit of hand-clapping into the whole August Rush-style of playing. It went off very well - and I do so love jamming with my big brother.

Very serious stuff, this music-playing-business - no gap for smiling here :)


  1. Aw, so sorry to hear about your boo-boo, sweet boy, but I can also understand your Mama's delight, so go easy on the old gal, OK? She really does love you! LOVE that last picture - he looks SO focussed!

  2. A rock star in the making Sammie....