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, July 21, 2010


I was watching a documentary on tv one afternoon last week ("watching" meaning parked on the floor surrounded by various toys/activities with Sam on my lap, simultaneously pressing and singing along with the various melodies, while trying to lipread what's been said on the tv). This particular program was about developmental, intellectual and emotional milestones of one-year old babies and the various factors which influence the timing/mastering thereof. So, needless to say, it was not the most uplifting thing to have watched (I shoulda just stuck with Barney or Mickey Mouse Clubhouse) and I had to keep reminding myself that a) these were all "normal" babies and b) with the exception of one, they were also all full-term babies. I didn't think the documentary had really affected me THAT much until afterwards when, as always looking for something new to entertain Joyful Smurf, I decided to try out a few of the "tests" with Sam and he only seemed able to work through the one task, which was sitting face-to-face with baby and then placing a sheet of paper between the two of you, the objective then being for baby to move the paper aside to see you again - which Sam did actually do. It was a little disheartening, but oh well - we went along our merry way through the next few days....or did we?

I am not sure if it was watching that documentary or something else completely but over the past few days I have found myself frantically trying to help Sam "catch-up" to where he should be developmentally...and it is EXHAUSTING! Now, let's first understand that Sam is nowhere near being neglected or ignored, he is 95% of the time either on my arm, in his pouch, on my lap or attached by some other means and I talk to him constantly, we sing...we dance...we play and I've been fairly satisfied that he is getting a considerable amount of stimulation - but all of a sudden it hasn't felt like enough, to the point where I started timing the periods in between interacting with him, for example, I put him him down so that I can attend to something quite basic, like brushing my teeth, (I have an OCD thing about has to be done for a precise amount of time, in a particular way, a particular order, etc) but then I start thinking like "Okay, he's been in his cot now for like 3 minutes - is it okay for him to have no stimulation/interaction for three minutes?" and then almost every morning I land up standing next to his cot, spluttering some-or-other kiddies song through mouthfuls of toothpaste. Another example - I take Sam for a walk in his pram most afternoons. We only walk for about 30 mins and he usually kips for most of that time, but yesterday afternoon he didn't fall asleep AT ALL and I kept looking into the pram and he just appeared to be staring into space and I started worrying about how long it would be okay for him to just lie there and found myself hurrying the walk up, just to get home and onto something else. And that's basically the essence of how our days are being spent....okay, we've sang songs now for twenty minutes, time to press buttons on Noah's Ark to hear the different animal sounds...okay, time now to walk around the house and point out different objects and say their's like running an endless race.

So I am really battling to find that perfect balance between providing Sam with just the right amount of stimulation for it to be beneficial without going overboard and having either him or I landing up like those cartoons you see on tv where the person's head starts whizzing round and round and round, faster and faster, smoke starts erupting out the top and next thing the whole head EXPLODES! I am in desperate need of some tightrope lessons to help me figure out how to walk this RTS line because one minute I am dangling precariously on one side by my little finger, manage to pull myself up to a kneeling on all-fours position....and before I can even manage to stand up....FFWHHOOOOPP! I'm hanging off the other side again!

Tuesday, July 13, 2010


Heeeeeehaaaaaa!!! (Said in true Jessie-from-Toy-Story-Style)..Sam's splints and, more importantly, wires are gone since yesterday afternoon at 12:45 and all is good....REALLY GOOD! The pulling of the wires went so well, we were in and out of Dr Carter's rooms within 15 mins and, apart from a slight flinching, Sam didn't experience much discomfort and certainly no pain, at all. The thumbs still look a little "puffy" which seems to be partly some residual swelling from the procedure and partly because of the excess soft tissue but other than that the actual cuts look great and already the scars are fairly unnoticeable. So, as per doctor's orders, it was back to normal immediately...and we started off, of course, with a bath and (shout for joy) no plastic bags, clingwrap, cellotape and all the other accessories/contraptions we've become used to over the past few weeks. There's still a little bit of dead skin around the thumbs but already by this evening most of it seems to have been washed away.
Now you see you don't!

Sam looks really happy to have his old "fleshy" thumbs back as opposed to those awful plastic thingies we had inconsiderately strapped to his hand..tsk tsk!
And of course the first place that thumb went (leftover blood, stitches, gauze and all - yum) was in his mouth and with wasting no time mind you - on the ride home!
I tried to get a better pic of what his thumbs look like but trying to get ol' Joyful Smurf to keep his hand/s still is not that easy, so this was the best I could do.
Well, it feels so great to be on the other side of Sam's very first surgery and now I also know that, should another thumb surgery be on the cards, I can definitely anticipate it with a whole lot less anxiety and fear! (Notice I say "thumb" surgery....any other surgery will more than likely cause the same amount of panic....Hee Hee).
So, what else has been happening? Sam seems to be getting a bit mucousy and croupy again...I am just praying that it goes no further than what it is now and we have our last Synargis injection for the season tomorrow so maybe those antibodies will give any germs a blasting (not even sure if it works like that, but here's hoping). When I fetched Chris from work on Friday afternoon I took the whole troop with me into his office and of course Sam LOVED the attention...all the ladies were standing around him and he just adored it and mustered up every bit of charm he could. He is definitely one attention-loving babe and knows just when to smile and play coy - do I see a casenova in the making? I thought that it was impossible to have a child that could be anymore "busy" than Meg but it seems as though, as unexpected as what it is, Sam might be proving me wrong but its an AWESOME unexpectedness I must add. There is not 5 mins of the day when he can be left alone without someone dancing with him, playing with him, singing to him (I've still to post my Sam-adapted versions of Wheels on the Bus, Old Macdonald and BINGO)...Sam received an awesome CD from his Aunty Vanessa for his birthday called Silly Songs which are mostly all the favourite kiddies songs but tweaked a little to include a Christian element, and Sam loves this CD. So, as tiring as what it is to keep up with him, his mind constantly sponging up every bit of stimulation/interaction and then asking for more is just an indescribable feeling at the moment. Sam was lucky enough to have a second "birthday" when his Granny and aunts, uncles and cousins came for a visit and hit another jackpot with some stunning birthday pressies...thanks again guys, with a special thanks to cousin Amy (another blog in the process - more soon) who specially picked out a beautiful outfit for her cousin Baby Sam!
On Saturday afternoon Meg, Chrisna and I went to watch Toy Story 3 which the girls loved but I felt was a little bit "violent" towards the end. The girls didn't seem to notice much so it all turned out well. On Saturday it is Chrisna's 8th birthday and we are going ice-skating - hope they have a size "tiny" ice-skate for Sam (what a better way for him to work off his energy). And of course today was back-to-school for us here in Cape Town, after 5 weeks of holidays.
Psalm 144:15

Sunday, July 11, 2010

Just to let you know

You have clouded our way with obstacles,
Have thrown at us all that you can,
And continue to hunt our souls,
Attempt to turn us away from the Creator of man.
And, yes...there are times when we falter, when we think yours is the easier way,
When our voices struggle to shout to you FROM GOD'S PATH WE WILL NOT STRAY.

Our enemies rise against us,
Blood rich with your enchanting darkness.
The constant battle begins to wear us down,
Fills our hearts with sadness.
But through the thoughts of worry and despair, a messenger delivers this verse
That reminds us to focus our thoughts on the heavenly and not the perverse.

"Whatever is true, noble, right, pure, lovely, admirable -
If anything is excellent or praiseworthy - think about such things."

So we close our eyes and take a deep breath,
Knowing what lays ahead.
Then we say a prayer and stand up once again,
With a smile this time instead.
Now we'd hate for you to waste your time,
So thought it best just to let you know,
That our hearts are strong and our faith is our shield
(Nicky de Beer : 11/07/2010)