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 24, 2011

I L.O.V.E. playtime

Hey Everyone. I so love having fun playing with my family...I really wish sometimes that it was playtime ALL day instead of only 95% of the day, but sometimes a kid just has to make sacrifices, you know?

Here's some pics of what we like to get up to.......

 So, Dad got me this very interesting starwars-sword-type-thing....I am not too certain how to use it....

 It doesn't taste ANYTHING like chocolate and definitely doesn't have any milk coming out of it,

 Mmmm...perhaps it's a foot measuring-type-thing...or bubblegum scraper-offerer?

 Just a random smiling me :)

 My most comfortable thumb-sucking position - although I it's more thumb-chewing than sucking

 Me and mom with one of my ever-present most-valuable little boats

 Me and Meg jamming out to some Barney on her "drumset" with the custom made drumsticks she made for us!

 Okay, Okay! So it's once with the right hand and twice with the left it!

 Me and Brampies totally destroying the brand new (rather pricey) Mickey Mouse Clubhouse book which, at the time of the photo, was only a couple of weeks old. So, Page 1 down.....nineteen more to go!

 Me and Dad doing some rough and tumbling Sam-style, but first, where can I put this lovely dollop of dribble first? Mmm..up there? Nah, it's too high.

 Whoa! Whoa, Dad! I can't be held responsible for where my dribble lets loose if you're going to tickle me like that.

 Waaaahaaaaa...and it's outa here!

 Okay, well...may as well get rid of the evidence in the meantime. Who needs wet wipes when you have Dad's hair? make me laugh, you silly billy goofball Daddy!


  1. Absolutely beautiful photos.......he is such a playful little chap and has so much fun with everyone. Now what could be more joyful than this????

  2. I L.O.V.E these pics - melted my heart!

  3. I love to play too! I hope we can play sometime! Natalie

  4. He is getting so big! His eyes are beautiful!