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, May 2, 2011

A super quick catch up...

Things have been very low-key in Smurfville over the past week. As our readers from the Western Cape will know, the last couple of school weeks have been a little helter-skelter. The first term ended at the beginning of April followed by a short five day holiday after which the kids returned to school for just under two weeks, before another week long holiday. So it's been a little challenging getting into the swing of things again, especially with the sudden onset of what appeared for a few days to be full-on Winter. Hallo? Uuuhhmmm, anyone spotted Autumn anywhere? You know, like the BEST season of the year when its still nice and warm in the days but cool and comfortable in the evenings? Anyway, why is this significant? Because our smurf does so love change, so having our routine so erratic over the past couple of weeks does not really help much. Nevertheless, minus that minor inconvenience, my mom is spending a couple of weeks with us which, it being a school break, did help hugely with Meghan who has basically had her Gran's undivided attention for exactly a week now and is thrilled at having a willing companion to play uncountable rounds of cards, general knowledge quiz's, puzzle building and, last but not least, to help out with the brand new kitty we brought home on Saturday, given to her by her dad for her birthday. I will definitely post some pics of the kitty soon, who is pretty darn adorable, but my battery is telling me I only have 19 mins power left so hoping to publish this post before then. Hopefully by that time "kitty" will also finally have a name as so far, since Saturday, her name has gone from Mickey (she loved watching the Hot Dog Dance with Sam - the kitty that is, not Meg), Minnie, Minky, KC (Kitty Cat) and is currently branding the Justin Bieber-derived title of "BiBi". 

16 mins to go!

So, other than entertaining Meg, having my mom here has also meant that Chris and I got to do some shopping while being able to spare Sam the experience, got to take Meg to a movie on Wednesday (Hop - absolutely LOVED it, so cute) and, most importantly, eventually made it to the twice-postponed, seemingly unobtainable goal guessed it....going out for supper...just the two of us!!! Woooohooooo! So, this very important event took place last night and the entire evening out tallied a total "away time" of one and a half hours, but it was soooooo worth it. It was like we couldn't speak enough to each other, it was absolutely wonderful to spend some alone time with my hubby and catch up on whatever seemingly-trivial news we've each missed out on over the past twenty-three months (YIKES!).

Speaking of catching up, this will have to be the end of mine as I have just eleven minutes battery power left but in closing, would like to introduce you to Sam's Guardian Angel...St Raphael!

St Raphael
which means
"God Hears"

1 comment:

  1. So happy that Mom is with you and that you and Chris have been out ALONE> Just hope that that did not cause the Tornado in Auckland.