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, November 14, 2010

Jumpy Smurf

Sam still loves LOVES L.O.V.E.S. jumping and why not? It's not like he's the one taking all the strain involved in his passion for jumping. Add a bell attached to some elastic string and you've got hours upon hours of smurfin' good entertainment....well, for Sam that is.

Preparing for take-off....

We have lift-off....

And down we go...
...already preparing for the next jump before those tiny feet (little turned-in foot and all) have barely touched ground.

For months we have been contemplating buying one of those Jolly Jumpers for Sam. Personally, I cannot say that I am too fond of them and never even considered buying one for Meg or Luke but, then again, neither Meghan or Luke found jumping as totally delightful as what Sam does and he doesn't really have a whole lot of alternate activities to look forward to every day. Just a month or so ago you could still manage to keep him entertained for a relative period of time just by sitting and reading a book with him or playing with one-or-other noisy toy but Sam's not having any of that anymore...he wants to be on the go all the time. So, eventually we decided we would have a go at buying one but were quite shocked when we found out how expensive they actually are. So, back-tracked then and decided to first give it some more thought as we already have quite a sizeable stash of unused baby goodies which we were confident Sam would find pleasure in, but alas! On Saturday morning we dropped Chrisna and Meghan off at church to practice for their Christmas Concert and when we went back to collect them, Aunty Diane had a stunning surprise for Sam (without knowing that we'd been considering this) - you guessed it, a jolly jumper! Of course we couldn't wait to try it out so immediately hooked it up at the church, as the children were finishing their practice, and Sam took to it immediately amidst an audience of children and Sunday School teachers. Chris and I were like....YAY! We won't need physiotherapy after all for our poor aching arms and backs!!!! BUT when we tried it out at home he kinda smiled for a moment or two and then? Bawled his eyes out! We thought, okay, maybe he's just having one of his "moments" so left it alone for a while and tried again later but got the same reaction. Now I am not sure what could have made the experience at home so distressing but we have only two options 1) We tell Uncle Johan that at least once a day I am going to bring Sam round to the church for some jolly-jumping or 2) At least once a day I am going to be driving round our neighbourhood anxiously searching for some random people to take home in an effort to re-create the audience Sam obviously wants. Or maybe I should just give it a day or two and try again? Okay, lets go with that one!

We decided to take the girls out for an ice-cream at a nearby (acclaimed) No. 1 Garden Centre this afternoon, but were a little disappointed when we got there as it has been some time since we last visited there and found the condition of the little petting zoo and generally the whole play area quite appalling. Nevertheless, the state of the place didn't seem to bother the girls too much (not until each one of them, at different times, ran their barefeet through the ample supply of animal droppings everywhere) so we let them finish their ice-creams and feed the animals, as they desperately wanted to do.

And while the girls played...

Sam slept.

In between jumping, Sam still likes making some time for "walking". It's really quite amusing to see how he automatically lifts his foot when going up a step, without anyone having taught him this. He also uses the same stepping when trying to walk over "Kitty" - poor thing, when he's not trying to simply walk straight over her, he tries to (purposely) stand on her whip-lashing tail.

Well, today certainly started off a bit better than yesterday but by this afternoon Sam was as ratty as anything. I honestly think that a large part of his whinginess is just pure frustration at not being able to be more independant and mobile but, in fairness, there's definitely something else bothering him as well, whether it be his tummy or teeth or the onset of illness. What made our morning quite special though was that at the end of this morning's service, our Minister asked Chris, Sam and I to join him at the front of the church while the congregation prayed for Sam. I don't think I could ever adequately express in words how completely uplifting it is to know that there are so many praying for us and how blessed we are to be part of such a caring and supportive christian family. As always...there has to be a "Sam-spin" on this story - I was holding Sam in my right arm facing me, while Johan stood behind me slightly to my left and as Johan started praying (and yes my eyes should have been closed, but I don't get to do ANYTHING with closed eyes anymore...not even sleep), Sam lifted his right hand in his crooked-type-pointing gesture and seemed to be reaching out to Johan, as if to acknowledge what Johan was saying. And at least we were spared the screaming he subjected us to the last time he was in front of the church, when he was baptised.

Only eight more sleeps till our next appointment with Prof F. I have definitely made peace with the fact that Sam IS going to have the TSC surgery and that it IS definitely in Sam's best interest to do it now before he suffers any further bladder or neurological damage but still have the occasional, momentary lapse of reason like this afternoon when while changing Sam's nappy he promptly showered both himself and my bed (sorry for the graphics) in a pretty impressive fountain of wee and the thought that maybe his bladder's repairing itself somehow quickly flashed through my mind. But by bathtime we were back to his normal dribbling :)


  1. he is gettin so big!are we seeing your guys Dec?

  2. What beautiful girls those are. As for Mr. Jumping Jack Flash he is too precious, I just love the step walking he is doing so well thanks to his marvelous Mom.