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)

Sunday, October 11, 2009


And so the "dummy hunt" was stopped dead in its tracks, much to my dismay. After another screaming consultation with our paed on Thursday (guess those first nine weeks in NICU has put Sam just a little "off" doctors....and physiotherapists...and speech therapists.....and orthopaeds....I don't know, I seem to be sensing a pattern here :-)) Anyway, our little (and I mean LITTLE as in L-I-T-T-L-E...Sam has picked up a total of ZERO GRAMS in the last eight days making him a total of (still) 3.3 kgs for his almost five months) has another ear infection, so it seems as if his immune system is just so very weak at the moment, hence the recurring thrush so the fewer "foreign" objects we stick in Sam's mouth, the better chance we have of trying to keep him germ-free. Guess I will just have to find another way to calm him down when the hysteria hits. Something oh so cute though is that Sammy has discovered his hands. Whenever I put him on the change mat for a nappy change he spends endless minutes studying them and slowly moves them closer and closer to his face, to the point where he goes completely squint. If that little thumb was not so incredibly angled, I am pretty sure it would have landed up in his mouth already. It's quite funny how, regardless of all the lovely stuffed animals and rattley toys we've bought him, the objects which arouse the most amount of fascination and "communication" from him are...the ceiling fan, the headboard, the ceiling...I know - his standards aren't terribly high for potential friends at the moment, poor kid...and now recently, his hands. This afternoon he was lying on his back, on Chris' chest...and every now and again one of his new-found friends would pop into sight..and he would smile every so sweetly (and of course go squint) at those little hands, as if to say "Oh, how wonderful to see that there's more of these friends in the lounge, as well as the bedroom!

Anyway, our evening out at the Spur on Wednesday evening went much better than I expected..Sammy basically slept through the entire evening. By the time he woke up we were already paying the bill and getting ready to leave. And of course, as usual, he caused a stir amongst the watrons with his charm and good looks...although I must admit, I think his main attraction is that unbelievable head of hair. Did I mention we've already had to give him a hair cut!!! And, horror of horrors, he is getting balder and balder by the day - but only mainly on the left side. He is sure to lose at least 5cm off his height should his little "Tintin-style kuifie" go. On Friday morning we went to visit one of Sammy's new friends, Amy Reece (LOL Siobhan)and this outing also didn't go too bad, it seems as if Sammy is slowly but surely getting more used to being out and about - although fear of those screaming hysterics is still making me a little weary. Maybe once he's completely healthy (if ever) I will feel less anxious every time we need to go somewhere.

Right now though, Sam is actually pretty sick - he is not drinking at all and the antibiotic has upset his tummy terribly, so he has the runs on top of everything else....which is going to do wonders for his weight. Not even sure we should attempt physio tomorrow. Will see how the rest of the day pans out.

1 comment:

  1. Sorry you had to stop working on a sounds on something for a while, then something more important comes up, so leave it alone, then try to pick up again where you left off. I think he'll find his thumb pretty soon, if he likes looking at his hands!