SAM...MORE THAN A CONQUEROR: Riddle me this....

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, August 29, 2014

Riddle me this....

Riddle me this
Riddle me that.
Some days are peaked,
Some days are flat.

Riddle me here
Riddle me there,
Senses unclear
Best beware!

This little dude's senses. A riddle, mystery and puzzle all on their own. Exhausting.

Over the past few weeks we're very very much back to throwing up all over the show again, not in the least bit reserved for unfamiliar places but seemingly more like at any place that's not home. We were visiting a friend recently who has an old-fashioned till in her school room. Sam was already anxious just about the outing in general. Meg was messing around by the till and pressed the little button to print a till slip but there being no paper in it, it simply made a funny sound. You can probably imagine what kind of sound - not particularly sensory disturbing, well not for us anyway but definitely distressing enough for Sam to throw up.

Again we're back to a fearful, plank-like extension when I try and get Sam to walk holding my one hand or using his walker yet a few weeks ago he walked all the way from the car into the physio rooms holding just my one hand??? And here's the doozey...completely fed up with walking around with soaking wet, long hair in the middle of winter thanks to not being able to use a vomit-triggering hairdryer I decided to give my hair the chop about 2 weeks ago. Still getting used to how quickly my hair now dries, after my shower this morning I hurriedly went about getting Sam ready for his physio session and happened to catch my reflection out of the corner of my eye as I rushed about. I looked like I had run headfirst into a Van de Graaff generator!

↑ If it wasn't for the hilarious notion of being able to sit down to have a cup of (warm) tea (Oh yes please) this would have been a pretty accurate picture.

So there was little else to do but sit Sam down in front of me (for more effective vomit-catching efficiency) and switch the hairdryer on. I first only tried about 10 seconds then stopped, expecting to see that 'I'm about to share some projectile vomiting" face. Nothing. Tried another 10 second round, then longer, and longer. Nothing! I had just started my internal whoop-whoop celebratory dance at having (finally) conquered something sensory related when it hit me. I've chopped off my hair for nothing!

Bum!

Luckily, Sam's sensory challenges being the chaotic labyrinth of unpredictability that they are, I will quite likely pop the hairdryer on tomorrow morning only to have him shower us all in some or other partially digested substance. Oh the anticipation!

So other than those fabulously entertaining sensory issues, there's been nothing particularly interesting to report. We've signed Sam up for the home programme at the Chere Botha School just to have a little guidance as to what next I should be teaching him. Having mastered numbers, shapes, letters and colours some time ago I am not 100% certain where to move onto next. While Sam's physical abilities are obviously compromised, the home programme co-oordinator was very obviously impressed with Sam's intellectual strengths, especially when I showed her how I 'test' Sam by drawing several balloons in black and then write the names of the colours inside (also in black so as not to give Sam any hints) and then set all the colour crayons out next to Sam. He will, without hesitating, correctly read the name of the colour needed and select it from the lot and colour the balloon in. Fair enough his colouring skills need a little attention, but it was a very proud mommy moment for me made even sweeter knowing that it's a skill I taught him myself ♡♡♡