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 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 of.....you 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"

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1 comment:

  1. antheaMay 3, 2011 at 12:25 PM

    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.

    ReplyDelete

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