SAM...MORE THAN A CONQUEROR: Bubble Boy

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)

Tuesday, October 21, 2014

Bubble Boy

Silence is golden they say...sometimes it's just silence...bursting at the seams with so many thoughts and worries and confusion, which putting words to seems to magnify...so rather, silence :)

Silence, however, can also simply be the result of being totally preoccupied with concocting up the most creative and convincing defense arguments for the countless assault, vandalism and similar charges you are inevitably going to be delivering on behalf of your 5 year old son!!

Sam has never been crazy about people coming into his space, but as he gets older his space seems to be growing at an alarming rate (currently about a 5m radius 'bubble') and now applies to things as well as people.

If making like an ostrich and burying my head in the ground when being overwhelmed with embarrassment and awkwardness was an actual possibility, my side of the Earth would strongly resemble a giant golf ball! Whether it's the kindly old gentleman turning around in his seat at Meghan's school function to coochie-coo Sam, the lady who suddenly appeared out of nowhere to squeeze passed our snugly positioned trolley (in which Sam was a passenger) in an already sensory-abusive supermarket or the young couple who unknowingly pushed their trolley tightly up against Sam's stroller in a crowded lift...each incident was met with the same intense and hostile behaviour from Sam (not even slightly deterred by the pain he must have felt when slapping the trolley in the lift). It's mind boggling for sure how his sensory challenges just continuously change and intensify.

But, as is almost always the case, there is another matter which so overshadows our Bash-full Smurf ;)

And it's also another reason for being a little quiet, fearing that sharing might attract the usual jinxing (you know, like v-wording and being healthy). I'm hoping that 'this' has been going on long enough to be a permanent part of our lives.

For the last 10 days Sam has not only pee'd in the potty every night, but has gone THREE whole days on just one nappy, which nappy comes off dry at bathtime! Yip, I believe our little dude is well on his way to being-potty trained...how awesome is that? Of course there's a twist. Would it be Sam if there wasn't? He refuses to sit on the one-and-only big enough potty we searched endlessly for, which is making for some entertaining housekeeping when standing over the potty and not all parts are adequately aligned or little curious hands go a-wandering :D But not for a second does this dim such an awesome step from Sam xxx

Looks like the most chilled, serene little guy ever - ppffftt! LOL!