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)

Friday, January 15, 2010


The past week or so I have been gushing about our Sam weighing 4.8kgs (I was wishing for just 4kg by what a bonus) and then when we downloaded our pics and saw this one I was really quite astounded...he is still so so tiny if you compare him to this 2L bottle. But hey, at least he was enjoying himself and when a kid's got no friends to hang out with over Christmas, he's gotta do the best he can and make a plan and he found his new plastic friend quite entertaining, thank you!

A rare pic of Sam with BOTH mom and dad (one of us is usually
operating the camera). The reason dad looks a little "strained" is because of his having to shorten his 6.3ft length to be able to fit into the pic with 5ft mom and half-pint Sammy!

Sammy with Oupa and Ouma (Chris' folks) who, unfortunately, rarely get to see him due to the four hour drive between our respective towns. But Oupa did offer on numerous occasions to have Sammy stay with them in Stilbaai!

Sam having a short afternoon nap - who needs a bed or a cot when
you've got mom to lie on!

And while Sam was having his nap.............

...the others were enjoying the lovely weather down by the river. No worries, next year Sammy will be right there next to all the other kiddies, building sand castles, splashing in the water and wrestling cousin Hendrik for his wheel-toy!


A pic of Sam in his "big boy" clothes....a real little boy trapped in a new born's body! (Makes me think of the story of Pinocchio for some reason...always wanting to be a "real" boy). BTW - the printing on the t-shirt says "I drive my mom barking mad"...have no idea what drew me to it "-)

Sam with the little hat his Aunty Cammy bought for him which says "Baby's 1st Christmas" (not sure what happened to the "Christmas"). And then a pic of Sam with Meg and cousin Elisma. Sam got to meet some of his cousins for the very first time this Christmas.

Sam having a good ol' laugh at something...or someone.

Wednesday, January 13, 2010

So Long 2009!

Wow...not only has Christmas come and gone, but here we are half way through January already. It seems like ages since I updated Sam's blog....could be cuz it HAS been ages. So I have been kinda struggling to return to our normal daily goings-on but Meg and Luke started school again today so there's simply no excuse for me to still be lagging around in "holiday" mode. We had a wonderful Christmas and New Year's and even manage to extend our little trip to six days thanks to Sam being fairly relaxed and comfortable, even with two changes to his environment over such a short period of time (pics to follow tomorrow!) and his health has been holding up quite nicely so far (touch wood).

So I cannot say that I am sad to see the back of 2009 which has been quite a challenging year for us, but I CAN say that I am unexpectedly thankful for some of those challenges...although, perhaps that is not entirely correct, rather that I am thankful for what we learnt about ourselves and each other as a family as a result of facing those challenges. I am by no means making light of Sam's "condition" or being disillusioned by what lies ahead for all of us and the chances are that when he falls ill again all positive thoughts will instantly vapourise (of course) but still, it is almost impossible not feel a certain amount of joy, thankfulness and pride at where Sam is today compared to where he was eight months ago...even six months ago. Granted his achievements are not the typical achievements a mom gushes about, but that's largely what makes them so the fact that when you hold your hand out to him, he automatically lifts his own hand and places it in yours...kinda like a Sam Hi-5....and how he "anticipates" certain actions like when we are playing with him and tickle him once or twice on his tummy or neck, the second you start moving closer to him he automatically anticipates the tickling and starts laughing out loud long before you are anywhere close to making contact yet. He has also started dribbling quite alot and has discovered that the dribble in addition to his "talking" makes for far more interesting "sounds" and tends to make his "bfbfbfbfbfbf" sounds now almost exclusively when he has just finished a bottle (what's better than dribble? Milk + dribble of course)! I am almost certain that Meghan and Luke did the same things but I was probably so focused on the more acknowledged milestones or achievements like sitting, holding a bottle, crawling, etc. that I never took the time to notice the more interesting ones...but thanks to our Sam I have been given the opportunity to pay attention a little more carefully.

So, here's hoping that 2010's blessings and opportunities and lessons will far outshine whatever inevitable challenges it will also surely bring....and I pray this for each and every one of family (whether it be biological family or RTS family) and all of our friends. The thought of the unknown is so completely daunting and something we instinctively fear...who wouldn't like to know what's going to happen in the next year? But sometimes the "known" can bring with it endless limitations which cripple our paths, for example we could sit back and say "Well there's no chance Sam is going to walk this year or even crawl so there's no point focusing on those areas"....the unknown forces us to push our expectations and aspirations to the limit, where we might rather say "we just don't know if he will sit or crawl or walk" so we spend some time testing those areas and, although we might not get to that specific point, we find out along the way that there's something else, completely unexpected, that he can rollerblading or doing backstroke in the swimming pool! JUST KIDDING! But you get where I am going with this...... :-) It's all just a little exciting, isn't it?