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, August 17, 2011

A little too familiar......

Okay, so we are on post-op Day no. 5 and already the all too familiar signs of the sensory trauma Sam experienced with his TSC surgery are here. The only difference? They've showed up so much sooner and with equal, if not elevating, intensity. Which effectively means we have had to accept back into our lives the relentless startling/Moro when moving or basically handling Sam or just putting him down to sit on the floor, the struggle to get him to eat of joys....the waking up crying every night. I am also struggling to control his pain effectively as suppositories are officially a no-no as from last night, due to the obvious discomfort he experiences when putting it in and the alternative option prescribed, being Myprodol suspension, makes him cough, gag and ultimately v-word so we are relying solely on 3-hourly, alternating doses of Ponstan and Panado for total pain relief - certainly not the most optimal solution. Yesterday definitely seems to have been Sam's worst day so far. In addition to his slightly-off wellbeing at the moment he seems to be holding me personally responsible for his whole ordeal. Quite a hectic statement to make, for sure...but what other assumption can I make taking his sudden obsession with smacking me in the face, more often than not square on my barely five-week-old post-surgery nose. I mean, I can certainly relate to his wanting to see more of my ENT...she really is THAT lovely a person...but there has to be another way to go about it :-D
I am trying really hard not to keep replaying the events of Friday over in my mind, but it's quite difficult when I think of all the "small" changes that could have been made which in turn would have resulted in HUGE improvements in the way everything played out. But a lesson or two has been harshly learnt in that I have had to realise I am nowhere near as assertive as I thought I was when it comes to advocating for Sam's care and that both Chris and I are sometimes so afraid of upsetting others, that it obscures our vision of ALWAYS ensuring that we act in Samuel's best interest first, regardless of whatever bad feelings might need to be dealt with as a consequence.

But, thank the Lord, tomorrow is a new day! I am going to write the remainder of this day off due to the already immense amount of time wasted on dwelling on my "what if's" and "should have's" and the potential number of "what if's" and "should have's" I am bound to dredge up before the end of the day (Oh...indulge me a little!). I am anxious to get to our follow-up appointment with the urologist tomorrow at 10:00am to find out for sure what, if any, other alternatives there are to having to put Sam through this again in Feb. I have read that there's a medication that could be used to bring the remaining teste down (although not sure if this is an option here in SA) or really kinda loved Aunty A's suggestion that we rely on faith to bring it down..but alas, I forgot that Dr J mentioned that in order to avoid the right teste from moving back up again before continuing the process, as the left one did, they have secured it to a blood vessel which I am sure would also prevent it from moving down.

In closing, some pics of our little conquering smurf....

On Saturday morning we were still under the silly disillusion that keeping Sam in bed the ENTIRE day might be an actual possibility. And Sam, being the ever compliant little babe that he his (?) decided to play along with some "fake" sleeping.

By Sunday Sam was determined to be more mobile and, as we were still doing suppositories then and had already been told by his urologist that a little crawling won't do any damage, we decided to give him some freedom. He did look frightfully "out of it' though...
...and just seemed to wander around in a bit of a daze at first.

It was't long before Sam found his favourite First Baby Words Book and wasted no time in finding one of his favourite pictures - the kitty. And talking about kittie's...our two are quite baffled, but certainly not ungrateful, for the few day's grace they've had from our tail-pulling little smurf.

Anyway, it wasn't long before simply paging through his book became too dreary and was quickly turned into some smurfskiing.....

On Monday it was Miley's turn to go for a spin!

Sam is fascinated with any picture of a person's face (particularly if it happens to be a female face)

"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope."
Romans 15:13


  1. Nicky, I'm soooo sorry that Sam and you and Chris are going through this. I know it is terrible to consider the what ifs, but it always helps me to think about this time next year. Next August, Sam won't be in surgery...he'll be playing around the house with no memory of this time right now. It's so hard to be in this moment, but this moment will pass and things will get better. Hugs to you, Cindy :)