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)

Sunday, June 18, 2017

As the parent of a differently-abled child...

...how hard should you push? How sure can you be that you're allowing enough consideration for health, physiological and emotional wellbeing. How sure can you be that you're not allowing too much consideration? And on which one of those would you most prefer to err?

A few years ago (and by "few" I mean ten or so...and that's where I'm leaving it), I travelled a fair distance to work each morning making my way into the CBD via either bus or train. Because I cannot pinpoint the exact year, I cannot remember exactly which mode of transport is relevant to this story but as I am leaning towards 1996/1997 (yes, okay...so a little more than ten years maybe) I am inclined to believe it is the bus. Travelling what seemed to be the same route a few times, was a young man who appeared to be roughly the same age and whose constant companion was his remarkable guide dog. So many times I watched the intriguing pair navigate the busy streets along Cape Town's Foreshore and brave the city's public transport (which was a courageous enough task for even the sighted) and could not help but stare intensely at the young man, hoping for the slightest sign of sight because my heart broke a little each time I saw him, at the thought of his having to encounter such formidable challenges each and every day...alone.  While my memory is a little sketchy about the minor details (like whether we were travelling by bus or train, what with them being so similar and all) after all my "intense staring", it would be fair to say that I'd have recognised his face anywhere!

A week ago our NPO held a fundraising event and the guest speaker was a gentleman by the name of Hein Wagner - A blind man with vision. Hein, who now lives predominantly in Sweden with his lovely wife and daughter, hails from South Africa and had travelled to his country of birth alone to speak at our function. I had read his biography a hundred times by then, had copied it into several media documents...but had never thought to look at any pictures. Hein's lifetime accomplishments read like something out of an incredible feel-good movie. Few sighted men could achieve all that he has, so to say I was excited and very nearly intimidated to meet him would be fair. Hein entered the venue on the arm of a colleague and my heart stopped. Yes it had been about...ahem...ten years (give or take another ten) but that face was all too familiar. His presentation was profound! Amongst other things, Hein spoke about how grateful he was to his parents for insisting he learn to become independent, placing him in a boarding school for visually-impaired students 100km away at just five years old! While I have no plans to ship Sam off to boarding school (although this is a traditional punishment I have threatened all of my children with), Hein's message inspired me to rethink the way in which I approach Sam's challenges and, in turn, the attitude I instil within him to approach those challenges.

Having done several rounds with many of the obstacles Sam struggles with the most already, I thought it was worthwhile revisiting the more fundamental tasks which, although perhaps appearing "basic" to many, would make a significant difference to our daily lives. So first up was independent feeding - with the complex puzzle which makes up the lil flappy dude's brain, one of his trickiest challenges is fine and gross motor planning leaving eating independently as something we have not yet been able to master. This weekend seemed as good a time as any to try again...

Sam's movements lately seem to be hindered by an increasing amount of tremors and shakiness, but after a few more tries he really seemed to get the hang of manipulating the spoon which also seemed to ease the flow of his movements a little. A change in utensils (I foresee mountains of dirty dishes in my future while we figure this out) and Sam was not only more comfortable with the process, but was even scooping up stray food from his chin!

We will of course spend some time on this new goal before we move on to something else (and right now I can't even imagine what that something else would be) but, as with any form of progress for a child with specific needs, the joy of seeing how impressed Sam was with himself and the encouragement of what a little perseverance and motivation can do, was pretty darn awesome!

And so...did I ever find out if Hein is in fact the young man who I witnessed so many years ago? I'll never know!! My lacking self-confidence and social awkwardness prevented me from asking him outright, despite him being very friendly and approachable. I have considered indulging in some Facebook creeping (because once you've been an intense starer there's little else more inappropriate) to see if I might come across a photo of him at around twenty years of age but the thought of finding him with a short, trendy hairstyle then like he wears now as opposed to the long, almost shoulder-length bob I remember the young man having then, would be strangely disappointing. So, for now, I fancy the idea that Hein Wagner is in fact the blind, young man upon whom my senseless sorrow was wasted as while I thought he was out feeling overwhelmed and vulnerable, he was in fact out conquering and overcoming 💜



Wednesday, June 7, 2017

Does he know...

...that he is different? I've wondered about this often before but could never really come to a solid conclusion and, honestly, wasn't sure it mattered much. About a month ago we sat in the ENT's office...I say "sat" but mean "flapped, whinged and occasionally shrieked"...with Sam becoming increasingly agitated as our wait ticked past an hour. The younger, more mobile patients (all 'typical') provided Sam with a momentary distraction as they played on the mat, hopped around, etc. but once that moment had gone (all 5 seconds of it) Sam resorted to taking occasional swipes at them, especially whenever one sprightly young kiddo entered his personal space...which personal space, with about 4x4m² being shared by four other children, had had to become remarkably conservative!

The doorbell rang and I cringed inwardly at the thought of having to tap into even more adept ninja moves, intercepting Sam's frustrated swipes at now FIVE moving (and thankfully, blissfully unaware) targets. A youngster of about 12 quietly entered the room with his adult companion. With my back being to the door and my neck currently alternating between despairing states of immobility or excruciating pain (but Yay! for still half-gracefully being able to carry 30kg's of flappy dude around right?) I had a limited view and decided a not-too-welcomed bear hug was needed by Sam at the very moment the newly-arrived patient had to brush by our chair into the room.

Surprisingly, no swipe...no smack...just the most magnificent smile as Sam watched the boy take a seat in the corner and pick up a magazine. As he settled quietly into his chair and I was able to glance more easily at the newcomer, I found myself suddenly fighting back overwhelming emotion as I instantly recognised his Down Syndrome characteristics. For the rest of our time in the waiting room Sam smiled, happy-flapped and ooooo'd admiringly at the very reserved youngster, the other energetic and now also agitated kiddies having suddenly become invisible. Sam has always shown recognition of other physically differently-abled children, for instance, when walking in a busy shopping mall he will quickly point out a child in a wheelchair, but this was more than simple recognition...it was a resonating of shared journeys and an instinctive knowledge that Sam and this boy were the same kind of different! Understanding this 'recognition' when the object of Sam's attention is in a wheelchair or walker or similar means of support is pretty easy, but his intrigue this time round would not have been triggered by any outward 'hints' and although incredibly heart-warming, has left me somewhat unsettled. 

Because of having Sam's learning potential constantly undermined due to his physical challenges, finding a school which focuses on his cognitive abilities rather than the physical has been life-changing. With Sam suddenly seeming so perceptive to those around him though, I can't help but wonder what the effects will be of his being the only physically-disabled lil flappy dude in his school. I do see occasional inklings of frustration emerging (okay...maybe "occasional inklings" is a little conservative #eyeroll) but because in my heart I know that he would not thrive anywhere else, hope that I can find a way to instil upon Sam's heart the very thing I spend a decent amount of my time advocating for...that being "different" is not only okay, it can be a pretty profound state of being. Wish me luck xxx


Mother's Day this year was one for the books (or blog in this case) as it came complete with a school-made Mother's Day card from the lil flappy dude. Although I am pretty sure that Sam's not particularly invested in the sentiments of Mother's Day as, of course, every day is in fact Sam's Day (just kidding) he sure did seem super-chuffed with his card!


And immediately after Mother's Day the lil flappy dude went and turned EIGHT! With his birthday falling on a Monday, he had  a small celebration with his classmates, which he was just as super-chuffed about...especially because there were balloons involved, the object of Sam's most passionate love-hate fascination.



And immediately after his birthday (like literally the next day) Sam went into theatre for his umpteenth number of grommets and for us to finally have an opportunity to intervene and hopefully provide some relief from the nasty issues those talon cusps have been causing. 

The grommets were a breeze, as always! The talon cusps were filed down so that they now lie flush with the gum/palate and then a little of the surrounding gum was cut away to make room for the bulk of the cusp which has yet to grow out. Sam had also made light work of grinding another two teeth down into the gum. Luckily these were both still milk teeth which could be extracted to make way for the yet-to-make-an-appearance adult teeth. The work on the talon cusps proved a bit of a bloody affair and Sam was not entirely impressed with the generous mouthful of blood he woke up from anaesthetic with (apologies for the graphic details). Since the procedure, now three weeks ago, we have had a rather challenging time getting Sam to drink fluids. Follow up consultations have reassured that his mouth, throat and ears are all looking really good so it has been a little exhausting trying to figure out what the issue is, which issue is now causing some very unwanted bladder problems. For a host of reasons (which I am not going to go into now) Sam still drinks mostly from a bottle. Knowing his complicated sensory system, the chances are that the first few bottles after the procedure caused a significant amount of discomfort (we were warned this would be the case) and so Sam has now developed a negative association with a bottle. With another kid this could perhaps have been a blessing in disguise, an opportunity to animatedly introduce an alternate, way more fun drinking apparatus! This is, however, Sam...so I'm pretty much doing WWF-style moves while squirting small amounts of liquid down his throat. Could it possibly have gone any other way 😉  

And, in closing, some recent school pics...just because 💜