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)

Friday, January 15, 2010


The past week or so I have been gushing about our Sam weighing 4.8kgs (I was wishing for just 4kg by what a bonus) and then when we downloaded our pics and saw this one I was really quite astounded...he is still so so tiny if you compare him to this 2L bottle. But hey, at least he was enjoying himself and when a kid's got no friends to hang out with over Christmas, he's gotta do the best he can and make a plan and he found his new plastic friend quite entertaining, thank you!

A rare pic of Sam with BOTH mom and dad (one of us is usually
operating the camera). The reason dad looks a little "strained" is because of his having to shorten his 6.3ft length to be able to fit into the pic with 5ft mom and half-pint Sammy!

Sammy with Oupa and Ouma (Chris' folks) who, unfortunately, rarely get to see him due to the four hour drive between our respective towns. But Oupa did offer on numerous occasions to have Sammy stay with them in Stilbaai!

Sam having a short afternoon nap - who needs a bed or a cot when
you've got mom to lie on!

And while Sam was having his nap.............

...the others were enjoying the lovely weather down by the river. No worries, next year Sammy will be right there next to all the other kiddies, building sand castles, splashing in the water and wrestling cousin Hendrik for his wheel-toy!


  1. What a great picture of Sam with his parents...It's nice to meet both of you in pictures. Now to get a family picture... I know how hard that is. Our first family picture with four people is quite hilarious. Sam is growing so much, even if he's still tiny!

  2. I love these pictures! I especially love your family one.
    Nathan is 31/2 and we attempted our first photo with him and he wouldn't sit still for it so we let hm run around. We have one photo with the four of us and he is blury because he's running past the camera....

    Thanks for sharing your pics.. You can never have too many!

  3. Wonderful pictures! so glad to come across your blog!

    Kelly W.