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)

Wednesday, December 8, 2010

Christmas Concert Pics

On a high-note, Sunday saw us enjoying the much anticipated Christmas Concert by our Sunday School at BCC and it all came together beautifully thanks to the many hours of practising and hard work put in by the children and Sunday school teachers alike.


 The costumes and props were gorgeous made by Aunty Saskia who also co-ordinated the whole concert.


 Even the teachers took part : Aunty Diane, Aunty Helga and Aunty Francis

 And Meghan and Chrisna took their parts very SERIOUSLY!



 Uncle Grant (who heads up our music ministry) also got up on stage and lead the congregation in the singing of "Mary's Boy Child", while Aunty Saskia prompted the children from the floor.

 Two beautiful angels

 Our "extended" family

On a rather low-note : we are not sure what is up with our smallest little angel. Since Thursday last week, Sam seems unable to tolerate any weight-bearing on his right leg, being his "strong" leg. For those of you that know how passionate our little Smurf is about walking, standing and jumping you will understand the concern in this. We had a series of x-rays taken yesterday from hip to toe of both legs, but it shows absolutely no indication of any fractured bones, which was my first worry especially taking into consideration the seemingly increasing occurence of our RTS-sweeties suffering with brittle bones as well their exceptionally high pain threshold. At least though a fractured bone would have provided us with an answer as to what could possibly be preventing Sam from using his leg as normal.

As jumping, walking and standing took up a rather large part of Sam's activities for the day he has found himself having to make do with things like sitting (for sure, his least favourite activity) and playing with toys.
 His body language says it all...

We are hoping that whatever it is that is bothering Sam rights itself soon

And....back to a high-note : Chrisna's step-dad, Heinrich, takes photo's for a stunning non-profit organisation called :  "Race to Live" whose vision it is to make it possible for children/adults who are suffering with life threatening diseases see their dream of experiencing a racetrack, come true.


Chrisna with her mom, Rona, and step-dad Heinrich
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2 comments:

  1. antheaDecember 8, 2010 at 3:18 PM

    Lovely pictures of the two beautiful angels and our special angel what a lovely shot of him lying down. Shame I hope whatever it is that is bothering him with his leg is soon over. It seems odd that nothing is evident yet he avoids using it. Yes he is so good at body language much better than we are. Lots of love.

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  2. Pudgy PencilsDecember 20, 2010 at 4:33 AM

    Hi I'm sorry to hear about your little boy's leg...he is such a cutie. Hope it gets well soon. Could it be related to his tethered spinal cord, or has that already been surgically corrected? (Just browsed in, haven't read the whole story so I may have missed that). --Mason's mommy, www.masonjosias.blogspot.com)

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