Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged. Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth. Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror
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)

Monday, May 16, 2011

Happy 2nd Birthday Sam and way....WAY....too many pics!

And when I say "way too many", I mean like in W.A.Y. too many. And I've only posted about a fraction of them.


So our little Conqueror Smurf is officially (as at 5:24pm today) Two Years old and One Day. We toyed with the idea of throwing him a proper party but thought it best to leave that until a time when he can really grasp the whole "it's my birthday" concept. So instead, celebrated with a little get-together with our extended family, which was just as lovely. And without any further ado....the pics.



 Ooohhhh...look, Mom! An envelope!

 Ooohhh...look Mom, a card!

 Okay, now as much as I love birthday cards, the rest of these goodies are starting to look so much more interesting. Here Mom, you hold this while I dig in!

 Yay, a xylophone from Aunty Cammy & Uncle Damian. Two of my favourite things wrapped up in one...banging and music, although these stick things look far more complicated than my plastic boats/cups.

Seriously Uncle D? This is what I gotta use to hit it with?

 Mmmm...okay, lets try one stick-thing and one toy guitar.

 I say phooey to the stick-thing, lets go with the guitar.


 Oh my goodness folks, I cannot tell you how many of these pics us kids had to pose for.
There were more flashes than at a fashion shoot. Well, it all started out kinda fun.....

 But could ya blame a guy for getting a little distracted?



 Chrisna, Meg and Meg!

 Our two Meg's!

 The "naughty corner"


It took longer to get this bunch to sit still than the kids!

 At long last, the moment I was waiting for!
No, not the blowing out of the candles...yes, all two of them.
Quick guys, help me get rid of this flame...

...so that Brampies/Oom Oupa can cut the cake....

...so that I can eat it!!!! Yay, delish!

This would've been a great family pic save for the teenager who was making like a bat
(and hiding in his cave)

Now you KNOW you've thrown an epic party when it's been attended by none other than Frikkie Bellville!

And what's even better than a xylophone?
Why, a floating xylophone of course!

Once Luke felt safe from the uncool, photo-taking adults he ventured out into the light for a little guitar instruction from the Birthday Boy!
(Boy, aren't teenagers loads of fun?)


And some random pics we took of our little smurf recently!

Happy Birthday Samuel!
You are such an amazing inspiration to us,
Through each illness, surgery, challenge and trial,
your spirit remains strong and passionate.
We cannot imagine a world without your giggling and uncontrollable laughter,
Without your sweet voice,
Without your love,
Without your wisdom,
Without your joy,
Without your many Sam-erisms,
Without the lessons you teach us daily,
We cannot imagine a world without YOU!
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1 comment:

  1. JacquiMay 18, 2011 at 9:17 PM

    HAPPY HAPPY HAPPY HAPPY BIRTHDAY Sam!!! Sending you BIG hugs! You have truly conquorered so much! You are so inspiring! And so are your parents...they have endured much, at times celebrating with joy, and at other times allowing God's strength to keep them from falling over. HUGS

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