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...
SAMUEL - COMPLETE IN GOD
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 happening....to 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, October 19, 2012

Smurf @ Pooh Caves

Last weekend Sam's Ouma and Oupa arranged a weekend getaway for the family at Pooh Caves (aka Guano Caves) to celebrate their 70th birthdays.  Making plans so far in advance is usually a bit of a gamble with little smurf but we were blessed not only with a healthy little boy but some pretty stunning weather too. Samuel loved being surrounded by his cousins and of course, absolutely adored the warm water pools.  This, together with the relaxed surroundings and great company, made for a pretty awesome weekend :)



Sam sharing his iPad (although sometimes a little reluctantly) with cousins Dirk and Kayla who both desperately wanted to have a go at the iPad many a time but were super obedient of their moms' instructions about not touching unless invited to do so - kudo's to moms Deirdre and Cindy ;)  Kayla was too adorable with Sam, who loved having her read to him (the most charming fairytale concocted from a Learning about Numbers book...and in English for Sam's benefit) and even quite happily allowed Kayla to play with his hands and hair. I found her questions about Sam's speech and thumbs so precious and even more endearing, her reassurances to me that "Sammy" IS going to walk AND talk. 




The "tent house" we stayed in which, quite surprisingly, worked out just fine with Sam as it had carpeted floors so he could at least have a crawl around every now and again.



Sam suddenly found himself cured of his on-again-off-again aversion to balls and thoroughly enjoyed throwing Dirk's ball around. Aunty Deirdre and Uncle Hendrik giving mom and dad a very-seldom enjoyed chance to sit down and eat together xxx


Of course all the waterbabies could think about was hitting pools.


And they weren't the only ones....Sam in blissful happiness


A quick break to attend to some sensory-seeking munching...


...and his off again.


For the first time ever I felt the stabbing heartache of having Sam push me away...LOL! The first pool we swam in was fairly deep and I could just about hold my head above the water while on my tippy toes which didn't give me much space to hold Sam. So it was up to Daddy to see to Sam in the pool and Sam adored being bounced around and swished through the water. When I tried to take him a while later he point blank refused to come to me and even pushed me away on more than one occasion when I even just came near, in case I had any intentions of taking him.  I am obviously just not as much fun as his dad, well in the pool at least. Oucherooni! Sniff Sniff!




Braving, but not loving, being on his tummy. 


Sam trying to make friends with two random little boys


That look says it all...Fun! Fun! Fun!


Goofy Smurf!

Unfortunately we didn't keep the camera with us all of the time so missed out on loads of pics of the entire family and all Sam's cousins...and most importantly, the birthday couple.  Next time!

Dankie Ouma and Oupa vir 'n baie lekker naweek xxx

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