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)

Monday, June 6, 2011

Still trying to catch up!

Sam completed his course of antbiotics and Celastamine last night. We almost didn't make it with the Celastamine after the number of times Sam threw up his medicine on the first day, but thankfully our local pharmacist (who knows us so well by now that as soon as they notice us walking in, they already start going to the shelves to collect Sam's meds) quite happily gave us a "top up" to complete the course.

So, our smurf appears to be feeling a little better but still, something seems to be bugging him. He is extremely clingy and his laughter and smiles come a little more seldom now. It could well be his teeth (Yes! Those molars and eye-teeth are still NOT completely through, almost six months down the line) as he is constantly mining in his mouth. It's really quite frustrating not being able to have him tell us what's wrong, although this isn't always the case. When Sam got really ill, I started putting him in our bed at night so that I could try and keep him propped up on his pillows to allow for some sort of less-laboured breathing and also to monitor his apnoea's. Now that he's been feeling a little better, we have been putting him down in his cot again at night (after walking him to sleep first, of course) but without fail, every night, he wakes up roughly at about 10:00pm. I told Chris I am sure it's because he suddenly realises that he's not in our bed, so promptly put him in with me. I could see Chris was a little sceptical about my theory and so when he woke up last Thursday evening, Chris went instead to pick up and then tried to walk him back to sleep. Little Conqueror Smurf was having none of it though and firmly pointed with his little crooked finger to the bed!!! (Yay Me!) As soon as Chris put Sam in the bed, he rolled onto his tummy and went off back to sleep.

By the way, I don't refer to his little fingers as "crooked" without good reason. Apart from Sam's angulated thumbs, we've noticed that (with the exception of three of his fingers) all of Sam's fingers seem to be slightly "different".  His two index fingers curve outwards (almost as if they also want to angulate) while the others seem unable to lay flat. In other words, if you put his hand on a flat surface you cannot press down on five of the fingers as even the knuckles seem to be "humped". I keep meaning to Facebook our RTS family to ask if any other RTS sweeties have this problem, but you know the story by now about my mind-like-a-sieve problem! Anyway, I have to....HAVE to....remember to ask hand-orthopaed about this at Sam's next appointmet, which is in July....uhhmmmm....or is that December? Hee Hee!

We are still trying to catch up on Sam's weight, which dropped from 10.6kg to 10.1kg with his being ill, but his appetite has definitely improved and he is still doing well with tolerating mixed-textured food. He even ate a bowl of freshly cooked veggies last night.


Sam and Ouma, when they came to visit last week (Ouma and Oupa, that is) 

The SUPER cool gate Uncle Hendrik and Oupa built and installed for us, which creates an awesome little play area for Sam while I can do what I need to do in the kitchen.

And an equally SUPER cool tractor, which Oupa made for Sam.
Note the name on the side!

Oh-so Handsome cousins, Hendrik and Dirk, came to visit yesterday. Sam was a little miz, as mentioned, and wasn't too keen to pose for a pic!
(I don't have a clue what that little circle of light is by Sam's head,
only came up on this one photo - weird)


But we eventually managed something remotely resembling a smile!
Now if only we could get all three boys looking in the same direction :)

1 comment:

  1. I can see he was not well in this pictures......love the gate well done to Oupa and the tractor is just too much.....did he actually make it what a clever Oupa Sam has. I think the circle of light is Sam's guardian angel

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