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, March 27, 2011

Extremely Embarrasing/Awkward Place to Vomit - No. 3

I absolutely HAD to mention that Sam had had a few vomit-free days, didn't I? Friday night for no apparent reason, he just started throwing up while sitting on my gagging or coughing first, no trigger whatsoever that I could see. I thought that maybe it could've been the one Nestargel bottle I'd given him earlier that afternoon. He's been drinking thin liquids ever since he had the tonsilitis because, with his sore and irritated throat, that thick liquid just made him gag and cough more and, at first, he seemed to be doing quite well without the Nestargel. But he's develped a "snore" again at night and battling with OSA which, we figured out through trial and error when he was much younger, was all related to his reflux. So anyway, after a particularly bad night on Thursday I decided it's back to thick liquid again, at least before he goes to sleep. But he definitely takes longer to digest the thickened milk, so not sure if this could have played a role.

Saturday afternoon we headed off to the shopping centre as our little smurf has finally outgrown all his 6-12 months clothes. He was quite sleepy at the time and in need of a nap so I'd hoped he'd fall asleep while being pushed around in his pram. Hope Schmope...before too long he started moaning and all of a sudden threw himself into a full-blown Sammy Scream Down...and, what do we know happens when Sammy screams? Sammy vomits! And the fact that it was the end of the month, on a Saturday afternoon when the shops are at their busiest wasn't about to deter our little smurf. Chris had wondered off in the opposite direction with the pram, which also had Sam's bag containing his blanket and spit-cloth which I could at least have had him vomit into as opposed to throwing up - super projectile style - all across the floor! And, the added benefit of being in a busy shopping centre at the time, was that I couldn't quickly make haste for the entrance and escape to the car...we first had to walk through the shopping centre covered in vomit!

I am soooooo tired of talking about I am sure you are sooooooo tired of reading about it. But, the reality is, it pretty much dominates our lives at the moment. I cannot wait.....with a capital YES PLEASE, for Sam to outgrow his throwing-up, but for that to happen Sam would have to outgrow his reflux (mmm...not too impossible) as well as the sudden and full-blown manner in which he throws himself into being upset! Nope, this one I don't see happening soon.


  1. Nicky just when you thought you could relax. Is there not perhaps a connection between the vomiting and the sensory problem. Maybe he becomes distraught when in a strange environment and this causes the vomiting? The vomiting is definately connected to him getting upset and it could be a link. What a challenge this one is. Do you know for sure that he will outgrow this?

  2. Hi Aunty A - nope, I don't know for sure that he will definitely outgrow it...just kinda hoping though as some of the RTS kiddies do eventually.