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, May 16, 2011

Happy 2nd Birthday Sam and way....WAY....too many pics!

And when I say "way too many", I mean like in W.A.Y. too many. And I've only posted about a fraction of them.

So our little Conqueror Smurf is officially (as at 5:24pm today) Two Years old and One Day. We toyed with the idea of throwing him a proper party but thought it best to leave that until a time when he can really grasp the whole "it's my birthday" concept. So instead, celebrated with a little get-together with our extended family, which was just as lovely. And without any further ado....the pics.

 Ooohhhh...look, Mom! An envelope!

 Ooohhh...look Mom, a card!

 Okay, now as much as I love birthday cards, the rest of these goodies are starting to look so much more interesting. Here Mom, you hold this while I dig in!

 Yay, a xylophone from Aunty Cammy & Uncle Damian. Two of my favourite things wrapped up in one...banging and music, although these stick things look far more complicated than my plastic boats/cups.

Seriously Uncle D? This is what I gotta use to hit it with?

 Mmmm...okay, lets try one stick-thing and one toy guitar.

 I say phooey to the stick-thing, lets go with the guitar.

 Oh my goodness folks, I cannot tell you how many of these pics us kids had to pose for.
There were more flashes than at a fashion shoot. Well, it all started out kinda fun.....

 But could ya blame a guy for getting a little distracted?

 Chrisna, Meg and Meg!

 Our two Meg's!

 The "naughty corner"

It took longer to get this bunch to sit still than the kids!

 At long last, the moment I was waiting for!
No, not the blowing out of the candles...yes, all two of them.
Quick guys, help me get rid of this flame... that Brampies/Oom Oupa can cut the cake.... that I can eat it!!!! Yay, delish!

This would've been a great family pic save for the teenager who was making like a bat
(and hiding in his cave)

Now you KNOW you've thrown an epic party when it's been attended by none other than Frikkie Bellville!

And what's even better than a xylophone?
Why, a floating xylophone of course!

Once Luke felt safe from the uncool, photo-taking adults he ventured out into the light for a little guitar instruction from the Birthday Boy!
(Boy, aren't teenagers loads of fun?)

And some random pics we took of our little smurf recently!

Happy Birthday Samuel!
You are such an amazing inspiration to us,
Through each illness, surgery, challenge and trial,
your spirit remains strong and passionate.
We cannot imagine a world without your giggling and uncontrollable laughter,
Without your sweet voice,
Without your love,
Without your wisdom,
Without your joy,
Without your many Sam-erisms,
Without the lessons you teach us daily,
We cannot imagine a world without YOU!

1 comment:

  1. HAPPY HAPPY HAPPY HAPPY BIRTHDAY Sam!!! Sending you BIG hugs! You have truly conquorered so much! You are so inspiring! And so are your parents...they have endured much, at times celebrating with joy, and at other times allowing God's strength to keep them from falling over. HUGS