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)

Wednesday, June 16, 2010


As you may or may not know...South Africa hosting the Soccer World Cup is in full swing. Well, if you're South African you most DEFINITELY know by the unrelentless blowing of vuvuzela's, regardless of the place or time. So, we decided to get into the patriotic swing of things and adorn our car (and selves) with some Fifa decor. (I must add that some of these picture were taken under great duress).

Sam got it all a little mixed up and thought he was taking part in some sort of pirate dress-up story "Aye Aye Matey....where's me patch?"
"What? No pirates? Well thats something to smile about."
Aaaannnddd....we're still doing the clingwraped/freezer bagged bathing - although I am not sure how much longer we can keep it up. With all the funny acrobatics and gymnastics it takes for us to undress Sam, bath him and get him dressed again while all the while holding those two extremely active arms still, our bodies are being stretched into angles not meant for human formation. If it was Summer it would be easier to just give him a sort of mini-shower in the bath, but alas it is not Summer and pretty darn freee-e-e-z-zing. I've even threatened to go by 20 different babygro's and vests (20 being the number of days until the wires come out of Sam's thumbs) and at the end of each day simply cut the clothing off him. Luckily we've not yet reached such desperate heights.
On a more serious note - we had a bit of a setback at Sam's appointment with Dr Carter on Monday. In between removing the old dressing and putting the new ones on, the wire in Sam's right thumb (which sticks out slightly from the tip of his thumb with a little hook to prevent the pin becoming covered by a layer of skin and also making it easier to remove the wire when the time comes) became hooked on Sam's jumper and of course, the second he moved his hand the wire pulled out by 5mm or so. Sam howled in excruciating pain and it took forever for us to settle him down again. Dr Carter reassured us that it would not cause any problems with the healing of the finger as the wires go quite deep into the thumb, but obviously the accident has now made the thumb even more tender and painful for Sam. I think I had also set my expectations a little too high with regards to the result I thought we'd see and so when I saw that Sam's thumbs are really quite far from being straight, together with Monday's little accident I just sunk into an awful pit, filled with self-reprove for making the decision to have the operation in the first place. But, thankfully, I have a wonderful friend in Jacqui who in a caring and loving manner, reminded me again of the overall benefit of having the operation. So, although it will be a little sad if the procedure has no immediate effect on Sam's thumbs, it does mean that they should not become any more angulated with age, which is what they were doing before.
So, we go back to the OT's on Monday just for them to do a quick check-up on the splints they made at our last appointment (which was obviously done under rather traumatised conditions) and then back to Dr Carter again for the removing of the wires on the 12th July. Yaaahhh! Sam is just not loving having to suck on the splint, although he has kind of settled on that for now. Chris suggested we go buy a cheap doll somewhere, cut off the thumb and attach it to the splint so that it might feel a bit more authentic for when Sam's sucks it, but it all seemed a bit too "Chucky-like" for me. One good thing about having the bandages off is it's far easier to go out in public. You won't believe the looks we'd get from people, walking around with this tiny little baby, completely bandaged up to his elbows. I was so close to just printing out a little note and attaching it to Sam saying "Please Note - the infant attached to this notice has undergone necessary hand surgery in order to rectify the angulation of his thumbs due to his having Rubinstein-Taybi Syndrome and has in no way been abused or mistreated by his parent/s. For further confirmation kindly contact Dr Carter at Life Vincent Pallotti Hospital or kindly soften the accusing look on your, otherwise, friendly face." For once, Samuel being so tiny was an advantage because with that note attached to him, passersby would instead be walking around bewildered thinking "Infant? What infant? All we see is a piece of paper being carried around like a baby by some dodgy little woman."
Other than that, the holidays are dragging drearily by but we have Father's Day to look forward to on Sunday as well as Sammy's Granny from Pearly Beach coming down for a visit. We haven't seen her since December so it will be great to catch-up and for her to see how much Sammy has grown.
And, on that note - a word from our sponser (or rather a look) - the one, the only, the exhausted (from yet another day with less than 20 mins napping).......SAM THE CONQUEROR! (Can't you just see how full of life and laughter he is by the time it gets to late afternoon).


  1. he looks so cute in his soccer outfit a real ladies man that little mr de Janina