SAM...MORE THAN A CONQUEROR: From Smurf to Ninja King

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, September 16, 2015

From Smurf to Ninja King

There are a number of things that can be said about parenting a child with special needs, but one thing which would most certainly not be included amongst them is that life is boring. In any way. Ever.

Sam has taken it upon himself to ensure that every man, woman and child within the greater Cape Town area is equipped to defend themselves should they unexpectedly be the victim of a sudden act of violence. To this end, he passionately dishes out blows of varied strength to random people as he sees fit...whether you be his sister, physiotherapist, friend, fellow-customer in the local fish shop or (calm my bleeding heart) a local celebrity who your mom and her fellow charity directors are trying to secure as the "face" and ambassador of said charity. #shame#cringe

In other words...the kid smacks. Everyone. All the time. Sometimes because he's agitated, sometimes because he's tired, sometimes because we're not understanding what he's trying to communicate, sometimes because you're too close to him (whether your fault or not)...sometimes to initiate a reaction and sometimes just for the blatant fun of it. Yes, really!

Of those, the most traumatic episode for sure was the customer in the fish shop. It was Friday night at an already busy supermarket and just before supper time too. Battling lately to physically cope with Sam's 20+kg's on my hip, I set him on the floor to walk around a bit (assisted walking of course) as we waited for our order. Before I had even had the chance to "settle" Sam on his feet, a lady brushed passed him and instantly, in a flash which would put any ninja's reaction time to shame, Sam reached out and smacked her on her leg. In an equally impressive turnaround time, Sam's hand was grabbed and held while the recipient of his latest self-defence drive bent down and said harshly into his face "Moenie dit doen nie!"(Don't do that).

I took Sam's hand away from her and while trying to put some distance between the two of them, began apologising and trying to explain, only getting as far as "I'm so sorry, his Autism..." but before I got the chance to finish my "...makes him anxious in busy environments, particularly when too close to others" I had a "Moenie dit doen nie! delivered up close and personal in my own face. Um...HUH? She proceeded to explain to me how my child is a gift from God and how her third cousin's, step-sister's neighbour from seventeen years ago also has a child with Autism. When her impromptu tutorial on Autism began broaching on the subject of educational options for children with Autism, I decided to take my leave and exit the shop, amidst several stares of unknown nature...I was not about to look around and take account of who was with this lady on my apparent lack of knowledge and guidance on all things Autistic, not having that third cousin's, step-sister's neighbour from seventeen years ago as a valuable source of reference and all.

Thank heavens I did not mention Rubinstein-Taybi Syndrome and/or Cerebral Palsy! But, hey, way to completely divert your social blooper lady!

In the lil dude's somewhat-flimsy defence though, at that stage Sam was averaging about one-and-half hour's sleep each night...I reckon I might be pretty smack-happy too then if I had had less sleep in the last week than what most folks had managed in one night. Thankfully, our Prof Prof seems to have nipped those sleepless nights in the butt for us! After three consecutive consultations wherein he expressed concern that Sam was possibly experiencing seizure activity throughout the night, disrupting his ability to reach deep sleep, I decided to trust the knowledge and expertise behind his several degrees and give the suggested Epilum a go, taking comfort in the fact that should it not be seizure-related (or some other funky brain issue going on) and there is no improvement, we can simply stop the Epilum without any detrimental consequences. With the well-known jinx which historically flips anything sleep-related I mention on this blog, I choose instead to share with inconceivable joy and relief that we are currently loving Epilum!!!

Truly a sight for sore eyes!

Over the years Sam has had many interesting objects be the focus of his attachment-obsession issues. From spoons to blankets, dolls and (his all-time favourite and often revisited) books. The AOO of the moment is....wait for it....empty dvd covers. The best part about this particular fascination is that he tries to gather as many of the covers as possible and has a meltdown of note should he lose his grip. As I said...anything but boring!