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)

Sunday, March 27, 2011

Extremely Embarrasing/Awkward Place to Vomit - No. 3

I absolutely HAD to mention that Sam had had a few vomit-free days, didn't I? Friday night for no apparent reason, he just started throwing up while sitting on my lap...no gagging or coughing first, no trigger whatsoever that I could see. I thought that maybe it could've been the one Nestargel bottle I'd given him earlier that afternoon. He's been drinking thin liquids ever since he had the tonsilitis because, with his sore and irritated throat, that thick liquid just made him gag and cough more and, at first, he seemed to be doing quite well without the Nestargel. But he's develped a "snore" again at night and battling with OSA which, we figured out through trial and error when he was much younger, was all related to his reflux. So anyway, after a particularly bad night on Thursday I decided it's back to thick liquid again, at least before he goes to sleep. But he definitely takes longer to digest the thickened milk, so not sure if this could have played a role.

Saturday afternoon we headed off to the shopping centre as our little smurf has finally outgrown all his 6-12 months clothes. He was quite sleepy at the time and in need of a nap so I'd hoped he'd fall asleep while being pushed around in his pram. Hope Schmope...before too long he started moaning and all of a sudden threw himself into a full-blown Sammy Scream Down...and, what do we know happens when Sammy screams? Sammy vomits! And the fact that it was the end of the month, on a Saturday afternoon when the shops are at their busiest wasn't about to deter our little smurf. Chris had wondered off in the opposite direction with the pram, which also had Sam's bag containing his blanket and spit-cloth which I could at least have had him vomit into as opposed to throwing up - super projectile style - all across the floor! And, the added benefit of being in a busy shopping centre at the time, was that I couldn't quickly make haste for the entrance and escape to the car...we first had to walk through the shopping centre covered in vomit!

I am soooooo tired of talking about vomit...as I am sure you are sooooooo tired of reading about it. But, the reality is, it pretty much dominates our lives at the moment. I cannot wait.....with a capital YES PLEASE, for Sam to outgrow his throwing-up, but for that to happen Sam would have to outgrow his reflux (mmm...not too impossible) as well as the sudden and full-blown manner in which he throws himself into being upset! Nope, this one I don't see happening soon.

2 comments:

  1. Nicky just when you thought you could relax. Is there not perhaps a connection between the vomiting and the sensory problem. Maybe he becomes distraught when in a strange environment and this causes the vomiting? The vomiting is definately connected to him getting upset and it could be a link. What a challenge this one is. Do you know for sure that he will outgrow this?

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  2. Hi Aunty A - nope, I don't know for sure that he will definitely outgrow it...just kinda hoping though as some of the RTS kiddies do eventually.

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