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, February 21, 2011

The Weekend in Pictures : Sam's first EVER swim

We've been waiting F.O.R.E.V.E.R to try Sam out in the pool but, although it's certainly been hot enough every day, the wind is always too hectic for us to give it a go. Luckily there was a fairly mild breeze yesterday so it seemed like the perfect timing. Sam was also lucky enough to have Janke, Uncle Christo, Aunty Henriette, Aunty Cammy and Uncle Damien sharing in this exciting new adventure with him.



 Sam and Daddy, Janke and her Pappa (Christo)

 Janke showing Sam how it's done - you just jump on in!

 Never a wasted opportunity for some hand-clapping!

 Janke and her Pappa


Okay, so I've heard of downscaling, but how are you and I both going to fit in here, Cammy?
And we could at least have got something with an engine!

 Sam was at first a little scared of being in his little carboat....

But soon relaxed a little...

 and was even brave enough to start playing in the water.


 Ooohhh...that darn sun! Where's my shades, Mom?

 Aunty Cammy and Uncle Damien


And, we finally managed to get some pics of Sam pulling himself up on the couch. Unfortunately, I couldn't start snapping straight away from him moving out of his sitting position because sometimes he looks like he'll fall over any second, so have to stay close in case I have to catch him. But at least got these....

 Shimmy one knee a little closer....

 Then the other....

 Lean a little this way....

 Straighten up a bit...

And I'm there.

Note the Barbie doll lying on the couch? An experiment to see if we can distract Sam with rather pulling a doll's hair instead of ours...still working on it :)
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4 comments:

  1. CindyFebruary 21, 2011 at 6:56 PM

    Sam, I love to swim underwater. You should try it! Natalie

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  2. Angelica mom to JesusRTSFebruary 22, 2011 at 6:35 AM

    it looks like such a great time i cant wiat for the winter to be over :)
    i was wondering how you got him to start clapping Jesus knows how to put his hands together but hates to clap he rather hold my hands and make me clap.. any ideas?

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  3. NickyFebruary 22, 2011 at 1:22 PM

    Angelica, it took absolutely forever to get Sam to eventually clap his hands on his own. He used to do the exact same thing as Jesus, in fact, he does that with everything, eg. he loves knocking on doors, counters, etc. but he doesn't like doing the knocking himself...so he takes our hands and makes us knock. So, it took lots of singing and watching Barney's Clap Clap song like 20/30 times each and every day. We completely unindated him with clapping and we'd almost given up when one day, he just did it. But the poor guy was under so much pressure that he's even clapped hands in his sleep already...hee hee! I am sure Jesus is going to be doing the same thing any day now!!! Don't forget to take pics :)

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  4. ChristineFebruary 24, 2011 at 8:12 AM

    I Want a car boat!!! Those were great pictures Nicky. Looks like he had fun. he's come a long, long way. Keep smurfing!!!

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