SAM...MORE THAN A CONQUEROR: Smurf @ Pooh Caves

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)

Friday, October 19, 2012

Smurf @ Pooh Caves

Last weekend Sam's Ouma and Oupa arranged a weekend getaway for the family at Pooh Caves (aka Guano Caves) to celebrate their 70th birthdays. Making plans so far in advance is usually a bit of a gamble with little smurf but we were blessed not only with a healthy little boy but some pretty stunning weather too. Samuel loved being surrounded by his cousins and of course, absolutely adored the warm water pools. This, together with the relaxed surroundings and great company, made for a pretty awesome weekend :)

Sam sharing his iPad (although sometimes a little reluctantly) with cousins Dirk and Kayla who both desperately wanted to have a go at the iPad many a time but were super obedient of their moms' instructions about not touching unless invited to do so - kudo's to moms Deirdre and Cindy ;) Kayla was too adorable with Sam, who loved having her read to him (the most charming fairytale concocted from a Learning about Numbers book...and in English for Sam's benefit) and even quite happily allowed Kayla to play with his hands and hair. I found her questions about Sam's speech and thumbs so precious and even more endearing, her reassurances to me that "Sammy" IS going to walk AND talk.

The "tent house" we stayed in which, quite surprisingly, worked out just fine with Sam as it had carpeted floors so he could at least have a crawl around every now and again.

Sam suddenly found himself cured of his on-again-off-again aversion to balls and thoroughly enjoyed throwing Dirk's ball around. Aunty Deirdre and Uncle Hendrik giving mom and dad a very-seldom enjoyed chance to sit down and eat together xxx

Of course all the waterbabies could think about was hitting pools.

And they weren't the only ones....Sam in blissful happiness

A quick break to attend to some sensory-seeking munching...

...and his off again.

For the first time ever I felt the stabbing heartache of having Sam push me away...LOL! The first pool we swam in was fairly deep and I could just about hold my head above the water while on my tippy toes which didn't give me much space to hold Sam. So it was up to Daddy to see to Sam in the pool and Sam adored being bounced around and swished through the water. When I tried to take him a while later he point blank refused to come to me and even pushed me away on more than one occasion when I even just came near, in case I had any intentions of taking him. I am obviously just not as much fun as his dad, well in the pool at least. Oucherooni! Sniff Sniff!

Braving, but not loving, being on his tummy.

Sam trying to make friends with two random little boys

That look says it all...Fun! Fun! Fun!

Goofy Smurf!

Unfortunately we didn't keep the camera with us all of the time so missed out on loads of pics of the entire family and all Sam's cousins...and most importantly, the birthday couple. Next time!

Dankie Ouma and Oupa vir 'n baie lekker naweek xxx