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)

Thursday, June 9, 2011

You'll never guess......

...what I had for supper last night, guys!

Cottage Pie!

No, Gerber has not added (unfortunately) a tasty new flavour to their range. And, NO, Mom did not try one of her previous stunts by sticking a normal meal through a blender...YUCK! (Have you ever had liquidised mac and cheese? Not pretty!) This was, let me say it again...NORMAL...cottage pie! With normal ground beef, normal pieces of carrots and peas and,  yes, even rice. And I loved it! What I loved even more though was that at like thirty second intervals at least one member of the family would come and stare at me eating and exclaim in delight that I was actually eating the cottage pie. Now, I know Mom's not the best cook in town, but really guys...her food's not THAT bad that you need such intense moral support. Mmmm...okay, maybe it wasn't really the cottage pie that was the issue coz I kinda remember the same reaction when sharing Mom's banana (un-pureed of course) with her earlier in the day. I am so loving LOVING food right now!

I am also quite thrilled that I could bring a bit of awesome-ness into the house though because everyone's really worried that, even though I've finished my antibiotics and Celastamine already, I am not only not 100% healthy yet but seem to be getting sick again. But what can a kid do, right? Almost everyone else in the house is still ill so my little antibodies are fighting their socks off trying to get me healthy with all the germs floating around in here. It does, at least, make for interesting snoring competitions at night with Pappa Smurf!

Hugs & Kisses from your friend, Sam


  1. Well done to you little Sam, just to celebrate your achievement I am making cottage pie tonight.....lots of love to all you sick uns there

  2. Go Sam! Food is so yummy...just wait to see what Mom is serving tonight!

    Your friend, Natalie :)