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)

Monday, January 10, 2011


It was my dad's (aka Brampies) birthday on Sunday but, as always, Brampies was keen to keep it low-key so it was just us and Aunty Cammy and Uncle Damien having some tea and cake...and cake...and cake! But before we get to the Birthday Boy!

Sam and Dad messing around with his pirate patch he got in a Christmas pressie. If only Sam had two of those patches he could place one on each eye and might even be able to tolerate the sun.  

We are having such a hard time with Sam's right leg again that it's really becoming quite frustrating and, to be honest, saddening. It's a whole lot of backing-and-forthing between the leg basically being pretty useless and sometimes looking like its on the mend, before Sam reverts back to not wanting to stand on it again. The saddening part is that sometimes he looks like he's going to use it and then the foot just doubles over....BACKWARDS! His toes just fold completely under him. The frustrating part is that I don't think anyone is really taking my concerns seriously - firstly, when I say that Sam doesn't want to walk anymore, I get this amused kind of look as if to say "Whoa Crazy Mamma - you do know the kid just started sitting, right? We doubt he was walking!" But for those of you in the know and as I've mentioned before, Sam loved being on his feet (think I've even posted a pic or two of him "walking" before) so there has to be something significantly wrong for him to change that now. And, yes, I know we've done x-rays and examined him and found nothing - but do we really just stop looking? Even though the problem persists?

Hey, how did that rant slip in there? Moving swiftly we've always battled to find shoes that fit that gorgeous little left foot of Sam's. He had a lovely pair of Ug boots for Winter which had velcro on the sides and at the back so we could basically adjust them to fit each individual little foot, but other than those we've at least a handful of "hopeful's" lying in the cupboard. On Saturday we found a little pair of (fake obviously) crocs which also have velcro at the back and fairly wide soles and they actually fit so we promptly purchased them with the hope that, while wearing them, Sam could not bend his foot backwards. Unfortunately, having basically gone most of his life without shoes, Sam was not too chaffed with having them on his feet and immediately tried to scuff them off (boys will be boys!). But they still do look kinda cute!

 Meg had the amost AMAZING surprise on Saturday afternoon. Her best friend, Danielle, moved away to another city in June last year and Meg was devastated although they are quite cute and still write letters to each other. On Saturday afternoon I heard Brampies calling to Meg that Danielle was at the gate and I though "Yikes Dad! Howse about you put your specs on for a change." (A side-step for later) But much to Meg's delight, it really was Danielle. Unfortunately her mom had lost my number but amazingly remembered where we stay and, even more amazingly, had she arrived ten minutes later we would have missed them as we were on the way to the shops. Thankfully, Smurf was not having such a great day and we were battling to get going. The girls loved having a quick catch-up, although it took longer to get them to part ways than what the actual visit took because they kept accidentally disappearing and there was a good fifteen minutes of begging for more time.

Sam's one good night last week was just good night :) Although he has been going down with less fighting, he is back to thrashing around and tossing and turning most of the night. After a particularly bad night on Saturday, him and I decided to stay home from church on Sunday morning (because I had this crazy idea that he would sleep then?) Anyway, Sam's absolute favourite part about going to church is reading the bulletin, it's what keeps him occupied most of the time and someone always ensures that he has a copy (especially Uncle Augi). So, the first thing Sam spotted when Chris walked in the door was his bulletin and wasted no time in catching up on all the notices.......

Now, Sam has obviously been paying close attention (perhaps too close) to what his big brother and sister try to get up know, those classic scenes where the kids are lying upside down, half hanging off the couch while watching tv. Being the quick learner that he is, Sam has already mastered the upside down on Wilcon Bear position (Wilcon Bear being a gift from Uncle Willie aka William the Conqueror and Aunty Elspeth)......
 The hanging over Daddy's leg position.....

And the perched on Daddy's tummy position. Well, it all makes for good reading, doesn't it?

 On Sunday afternoon, after a serious lack of sleep, Sam had to borrow Aunty Cammy's shades just to keep the glare out a bit.

 And finally, a picture of the Birthday Boy with Luke, Meg and Sam!

Sam is trying to copy the whole spikey-fringe thing Luke has going on......not sure he's wearing it completely right though!

The side-step : Sam L.O.V.E.S. de-spectacling Brampies, with just the flick of a finger he can have those specs off in a nano-second. But Brampies does not always remember to put them back on and half an hour later you will bump into him, eyes all scrunched up, forehead wrinkled into a hectic frown...wondering round the house totally befuzzled as to why he can't see anything. In fact, he's even left the house WITHOUT them and ten minutes later called to say he can't make out any of the road signs, traffic lights, other cars, hills, etc. Okay, so I exaggerate a little....anyway, and we've had to drive his specs through to him.

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