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, September 10, 2014


Do you have any fears? The crippling kind? I sounds ever-so cheesy and overdone but I have a very real fear of heights. The kind of fear of heights which had me near hysteria on a ferris wheel...despite being in my early 20's...while my 5yr old son sat calmly next to me, enjoying the sights of the festival below. The same kind of fear which prevents me from looking down lift shafts and enjoying the delights of Cape Town's most loved attractions like the cable car up to Table Mountain. 

So, if I had to imagine what it would be like to live each and every day...every hour...facing fear, I would picture myself trying to perform everyday functions while teetering on the edge of a ridiculously high cliff. And just thinking about the most simplest of activities, like walking, makes me want to cover my face and cower down. 

And that's pretty much where we're at with Sam at this moment. 

I don't usually like to post when we're going through a rough run with Sam.  I find that waiting for that moment to pass usually allows for a less emotional, more inner-reflective post...which can be quite therapeutic.  And, another big plus, makes me sound less like a whingey not-coping-that-great mom.

But this moment just ain't passing...and I fear that if I wait, we'll next catch up round about Sam's 21st birthday! And my 56th birthday....Eeeeek! I just discovered a new fear...ageing! Nah...just kidding. 

Sam experiences life at the moment cowering down, shielding himself from the world...which has become an unbearably frightening place for him, even more so than before. Sam has, and always has had, two different kinds of defensive aversion to anxiety-triggering elements,  eg. the puking at the sound of a hairdryer. And then completely debilitating fear, eg. when you lie him down on an unfamiliar surface (say to change his nappy) and he is so afraid that he can't even breathe. These two reactions have completely switched places and while sensory aversion occurred more frequently with moments of terror only happening very occasionally when circumstances of our surroundings were beyond our control...I now get commanded by Sam to blowdry my hair every morning! And cars induce the same reaction lying down used to! 

Cars? Cars! *sigh* 

As soon as Winter showed just the subtlest of signs of letting up, we pounced on the first opportunity to commence our usual insanity-preventing evening walks a couple of weeks ago. Suddenly with every car which drove passed us, Sam covered his face with his hands, turned his body around and tried to push his body as low down into the stroller as he could manage. And so it carried on the moment Sam noticed a car approaching.  A few nights later, determined that at least Sam would get some exercise,  we took him out front to walk an extremely short distance down the road, holding our hands. With us staying in a close, we expected there to be limited traffic...which there was. Suddenly Sam turned in panic, near climbing up my leg in his desperation to be picked up. Sure enough, a hundred metres or so in front of us, was a car....a stationary car. Which had been parked there since we began our stroll! and walks are now out!  It's so heartbreaking to see how full of fear Sam is without having the benefit of verbal communication to be able to soothe his worries and determine exactly what feeds these struggles.  I used to pray each and every night that the Lord would lay His healing hands on Sam's brain, allowing him to master walking and speech. Recently I changed the nature of my prayer...I pray that the Holy Spirit will completely overflow within Sam...will quiet his many fears. Just days after my new petition, so intrigued with his obsession with numbers,  Sam stood holding onto the kitchen counter on his own, completely absorbed by the scrolling numbers on the microwave seemingly unaware that I had removed my support from behind him. I have hope ♡

As Sam's anxieties grow in triggers and severity, so does his intolerance of social activity.  In church this morning we sat at the back, right next to the door in case I needed to make a rushed exit for some vomit damage control.  Every time the door opened Sam threw himself into serious unmanageable extension (almost landing on the floor several times) while protesting loudly.  It was undoubtedly the most highly-strung we've seen him during the passed few weeks and having  substantial comparison,  that's a little worrying.

On a positive note, Sam has replaced his favourite play-it-till-it-induces-nausea balloon song with a fresh tune... I'll give you 3 guesses what the new favourite song is. Nope, let's make that 300 guesses because there's no way you'll get it right.  Are you ready? 

Acapella by Karmin

Yes, you read right! I know, crazy isn't it?Not as crazy as having to listen to "Nevermind...bring the beat back" after Karmin "does it in falsetto" around 20-30  times each and every day (cos that's just a whole new level of crazy there)! 
But crazy nevertheless. 

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