SAM...MORE THAN A CONQUEROR: Nocturnal Smurf

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, February 20, 2014

Nocturnal Smurf

Crocodile Samdee :)

Nocturnal Smurf was my original heading for this post after Sam pulled another all-nighter amidst several evenings of his usual sleep-challenged nights. Sam's only second ever art class was to be held at our house on Friday. It seemed like a good idea at the time but when Friday morning dawned and Sam had very few hours of sleep to brag about I started feeling a little anxious about Sam's ability to peacefully allow his friends to explore his territory. While Sam did not really participate in the art activities himself, he was unexpectedly okay with having the group in our small house and actually enjoyed quite a few delightful moments watching the others playing and putting on a show for him. Yes, there were one or two narrowly-escaped hair pulling and toy throwing incidents but at the end of the class I felt

the art class had been a successfully interacted experience for Sam, minus the actual art of course.

Sam was fairly exhausted by evening and fell asleep quickly... and awoke just as quickly somewhere before midnight, not shutting his eyes again till 8:36am on Saturday morning for a two hour nap.

There was bodybashing, crying, frustration, desperation... but no sleep. Oh... and there was fever... and vomit. Saturday and Sunday both flew passed in a haze of exhaustion and more of the above while trying to attend to necessary tasks, like laundry, in the 40ºc heat. Somewhere round 6pm on Sunday I remembered I'd done a load of washing and forgotten it. With the heat still stifling at that time I chose to quickly hang it out and it was in my haste that I trod incorrectly on an uneven piece of ground and popped my ankle.

Off we rushed to the local trauma unit where after 4 hours of waiting and 6 x-rays the on call doctor determined it was just a bad sprain and after applying a bandage, sent me on my way with instruction to keep off the foot for a week. I was a little uncertain of her diagnosis but anxious to get home to my sick little man.

With Sam being really miserable and clingy it was a little difficult to keep my leg elevated and while I didn't stand on the foot, I most certainly had to resort to a little weight beating.

By Tuesday morning Sam's temp was still hovering around 38ºc despite meds so I made a doc appointment for him. Chris' phone rang several times during the consultation from a somewhat familiar number but we did not want to be rude and answer it. Upon returning the call we were advised that my x-rays had gone to the resident orthopaedic surgeon who had found a fracture.

Pretty handy info to have had 36 or so hours earlier, or what?

Next step (or rather clumsy crutch-clutched lurch) was the fitting of an aircast and the countdown to a follow up consult on the 28th. Over and above the pain and discomfort of this bulky apparatus in the middle of summer is the rather heartbreaking issue of not being able to take care of my lil smurfy dude... especially when he is ill :(