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)

Thursday, April 14, 2011


As mentioned yesterday, Sam had another OT session this morning (No, I didn't remember to ask about getting him to sleep, it completely slipped my sieve....uuuhhhmmmm, I mean MIND). I don't know about ol' Smurf, but I thoroughly enjoyed it. Sam was a little bit grumpy after having woken up that way this morning which made him a little challenging to work with, but I adore watching and learning all the different techniques and activities one can do with him. So, new activity learnt today was Sam playing in a ball "pool" which basically consists of a camping cot filled with little plastic balls you often find in kiddies' play pits. Sam did surprisingly well, although I did have to climb in with him. Luckily enough we have an entire bag filled to the brim with the same balls at home which Sam hardly plays with and we also have an unused camping cot, due to Sam's depth and colour sensitivities. Then remembered that the camping cot would not be at all practical as it is not flat on the ground, but stands on little feet which wouldn't be a problem for Sam's tiny little being but mine on the other hand??? Putting him in there on his own also isn't an option because if he was able to tolerate being in the camping cot, we wouldn't have had to go out and buy a whole new cot recently. So, on to Plan B which is clearing out one of Sam's toy boxes which is high enough to prevent him from falling over and out should he wriggle too much, but low enough for him not to feel threatened or insecure and to still see what's going on around him. Well, it turned out to be an excellent improv as he went into his new "ball pit" with surprisingly little reluctance and spent a good ten minutes in there until I started feeling guilty about leaving him on his own (meaning I was a whole arm's length away as opposed to having him attached to me) and took him out. In any case, wouldn't want to overdo it to the point where he starts developing a negative reaction to it but it was so great that he tolerated it as it helps with deep pressure input and, once he becomes more comfortable, can even become a stimulating activity by putting him in there and hiding one or two of his favourite toys and having him try to find them. Here are a few pics.....

 Snug as a bug in a rug!

 Of course there had to be knocking involved and how cool for Sam that he could knock with two hands at the same time, without having to even fully outstretch either arm!

And, talking about bugs, I put Bigley Bug into the box with Sam as BB has a little mirror on his tummy so Sam could occasionally check himself out, which he loves!

Need I report that Sam had to be walked to sleep again last night? If this was not the case I would have either had to worry about someone sneaking into the house and switching my little smurf with some strange fall-asleep-on-its-own type baby or had to doubecheck that my post actually published in the first place because when oh when has it happened that I've posted about something great happening and it actually stays that way??? But, thankfully, there was no vomitting involved which is a pretty good second prize, even though my back, shoulders and arms contort into all sorts of spasms once Sam's eventually asleep. (Mmm..perhaps that is why I seem to have lost most of the use in my left arm and hand...seriously, in a matter of five minutes this evening I dropped Sam's entire bowl of supper and then the shaker with his milk in it. On Monday night I dropped a bowl of boiling hot rice. Anyhoo....) This evening, with Sam being super exhausted after a very active day, I decided to try and persevere with just putting him in his cot and made sure that everything was as it had being on Tuesday evening...all was going well, other than an occasional whimper. HOWEVER (yes, there's a "however") while Chris and I watched from well concealed hiding places in the room to make sure Sam was okay, Chris started caving and it was a matter of minutes before he'd picked Sam up. Naturally I told him that he'd destroyed all my hard work and perseverence....all two nights of it....and that he would have to get Sam to sleep...which he promptly did - WOOOHOOO! No spasms for me tonight :)

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