SAM...MORE THAN A CONQUEROR: Sam's Mighty Roar

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)

Thursday, September 22, 2022

Sam's Mighty Roar

Four weeks ago, today, Sam and I “woke” from our most profoundly sleepless night in thirteen years and, those who know us well, know that there is a significant collection of sleepless nights in the running for that accolade. The Precedex/Morphine cocktail Sam had been fed through the CVP line in his neck after surgery (Supraglottoplasty/Subglottic Stenosis follow-up) ensured a deep-enough post-theatre nap…but just as I was about to unpack my illustration tools for a kiddies’ storybook recently penned, in anticipation of the three sedation-filled days which were meant to follow, Sam’s eyes fluttered open. And there he and I sat throughout that Wednesday night…a 54kg strapping young lad, without the cognitive or communication skills needed to process the absolute terror of his surroundings and all the lines and tubes invading his (already) sensory traumatised body, too petrified to so much as move his head. And an emotionally depleted mom, at her most helpless and heartbroken, watching her precious boy’s tears trail down a bewildered face, frozen into a silent cry, devastated by not being able to comfort him the way he wanted. And I thought about my little book (Sam’s Mighty Roar) which shares (in an age-appropriate way) why Sam’s frustrations and anxieties often end in shouting fits, mentioning anxiety triggers like sensory overloads and the like, but not moments such as these…moments which so many of Sam’s differently-abled peers have to overcome, often with an unintentional disregard of the emotional impact which, with their lack of adequate communication skills, is regularly commended as a “high pain threshold”. On this night Sam’s roar was not so mighty. But his fighting spirit was!

A few hours later when the ridiculously uncomfortable chair I’d had to sleep in (thankfully so, as it kept me fully awake through Sam’s first night) began to feel just the right amount of comfortable for a late-afternoon nap, the first signs of that Mighty Roar resurfaced, prompted by a tummy which, after a 48 hour long fast, was no longer bowing down to anxiety. Jelly was administered STAT and shortly thereafter, despite Sam’s urine catheter removing itself (OUCH), Sam actually settled in for a decent night’s sleep. Fellow DJ’ing parents (Different Journeying parents – not the music kind…although possibly them as well) will relate to the consistent flow of movement and noise in an ICU though, so mom, instead, watched how the moonlight rendered the steady movement of a crane in the harbour as it loaded a ship, a peculiar alien-like illusion and pondered on the many entertaining moments sleep deprivation provides!

By Friday morning, after doing well on just 10mls of nasal cannular throughout the night, the supernatural healing which had been prayed over Sam by our church community was boasting its glory as both Sam’s oxygen and sedation cocktail were weaned off and, after consuming three helpings of macaroni and cheese (yes…breakfast, lunch AND supper!) and acquiring a new drinking skill, Sam’s feeding tube was removed on Friday evening. Another peaceful night ensued and mom even managed to catch a couple hours of sleep as well, with the occasional wink from my alien friend. Late on Saturday afternoon the planned five-day ICU stay was firmly cut short as Sam made his way home from his 24th surgery (give or take a set of grommets or two forgotten from his medical overview – mom fail #1752).

The Supraglottoplasty, to repair Sam’s laryngomalacia, was extremely successful (as shared by Sam’s phenomenal ENT surgeon), requiring less tissue to be cut away than originally thought. Sam’s Subglottic Stenosis though is something he will continue to live with, exacerbated by fragile lining of Sam’s airways and making the airway vulnerable to rupture should the incorrect size tube be used during intubation. Hopefully the remedied laryngomalacia will alleviate the need for so many intubations and has already proven its success by creating the airway space for an EVEN MIGHTIER roar! Yes! Who saw that coming??

Just a week after the surgery, while still navigating the usual (but oh-so manageable) emotional rollercoaster that follows all of Sam’s procedures (heightened anxiety and clinginess, night terrors which result in even-more-than usual sleep disruption, etc), I found myself in awe of and unimaginably thankful for how incredibly well Sam recovered from the surgery…and, too, for the outpouring of love and care from so many…thank you for all the messages, thoughts and prayers.