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)

Saturday, August 6, 2011

But Mom...I just LUV her!

Mom [wondering why Sam is so quiet] : What you doing, Sammy?

Sam [smiling innocently] : Nah, nothing know, just hanging around and stuff!

As soon as Mom turns her head (or so Sam thinks), he focuses again on the object of his attention, with a grin so mischievous it's even apparent from behind...while humming softly to himself "A hunting we will go....." first we try lift up this leg... 

Or maybe it's THIS leg... 

No! No! It MUST be this leg then... 

Oh..COME ON! I am soooooo close.

And what, may we ask little smurf, might have you so determined to climb up on the chair?

Why, the kitty, of course! Oh please, Mom, don't just sit there giggling while I struggle so. I PROMISE not to grab her by the tail as I *ALWAYS* do. I just LUV my kitty so much. Please? 

Seriously? You're just gonna sit there?  
Well, who can say "No" to such a desperate little face? So, I lifted Sam up onto the chair and guided his hand to softly touch our Belle Kitty, but the second I let go of his hand, what do you think he did?
Promptly grabbed her by the tail and tried to lift her up, as always. Anyone have any great ideas/suggestions for somehow showing a predominantly non-communicative smurf how to gently deal with animals? Sigh.

Trying to climb up on chairs is not the only thing our busy little boy has been up to. In keeping with his obsession with knocking and banging, he has found the closing of Oupa's newly made safety gate to be extremely entertaining. And will go to any lengths, literally, to slam it...again...and again...and again! And, if we refuse to indulge him, he'll jolly well try and do it himself. 

What a busy little boy....a gloriously and thankfully busy little boy!

So.......6 sleeps till Sam's surgeries! Let the nerves begin. *Double Sigh!*


  1. Ha ha ha one clever little Sam....fooled yall these captions you are a very gifted writer Mum of Sam.......

  2. Those kitty tails are so tempting! Sam understands everything you are saying, so keep showing and telling him how to be gentle...he'll get it one of these days.

  3. You just have to keep reminding and showing him how to be gently, he;ll get it eventually. We always have to remind Sawyer to be soft to the dog, he seems to be listening.