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, August 29, 2013

Techno Smurf takes a fall

So the inevitable happened...Sam took a tumble from his walker.  It might sound terrible, but it was sort of kinda funny...I guess if it had been a more serious tumble I wouldn't be saying that.  He's gotten so confident with the walker that if he gets himself stuck in a corner or something, he simply pulls and lifts the walker up until he's free...but pulled a little too hard this time and overbalanced. The funny part was that it was in the most comical slow motion. Usually, when about to fall, Sam makes like a plank, often resulting in his head been the first part to hit the ground. This time, he fell (really quite softly) onto his bottom...sat there for a second or two and then ever so slowly toppled backwards. Thankfully the only thing thing hurt was his feelings at me trying to stifle a giggle while comforting him.  I did worry that with his tendency to avoid actions which have caused him "trauma" he might be reluctant to stand up with his walker again but just minutes later he was waddling around as if nothing had happened.  Phew! 
Apart from his newly acquired walking skills, Sam is fast acquiring a new skill....surfing...the net.  A couple of weeks ago, while trying to post Sam came crawling over and asked to be picked up. When it became obvious that him sitting content on my lap while I typed (Really?) was not going to work out, I went onto Youtube and let him watch some kiddies video's (where we discovered the Mother Goose Club - which Sam is now heavily addicted to). What was I thinking? Now the second I come sit in front of the computer, he's trying to get up on my lap, pointing at the screen and signing which video's he wants to watch. Yes, we actually downloaded his favourites onto his iPad but apparently they have a completely different appeal when watched on mom's lap in front of the computer. Another favourite activity is checking out Facebook and watching what his RTS sibling across the globe are getting up to, particularly this last week with it being back to school for our overseas RTS family...which meant even more photo's. 
Mother Nature has evidently been spending too much time social networking too as she's been a bit slow on the nearing Spring transition.  So, still having really lousy not-much-good-for-outside-activities weather, it was an absolute blessing to have some wonderful sunshine this last Sunday made even better by an impromptu visit to Haven of Hope...

Sam's friend Antoni with his mommy, Marili

Sam and Aunty Cheryl, enjoying a cuddle after not seeing each other for so long

Here's longing for some more of the same xxx

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