SAM...MORE THAN A CONQUEROR: Learner Drivers

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, March 7, 2013

Learner Drivers

Don't worry - he didn't really fall at the end of the video :) Just came up a little close and then got a bit of a fright. So Sam's taking a little longer to get used to the swivel wheels than what he did to the actual walker, which happened almost immediately. He's still grasping the concept that, while holding on, the walker follows his hands...and being a rather busy little dude, his hands are all over the place. So holding on to the walker and his book, while gesturing about what he can see around him plus a little (gobby) talking and singing makes for a challenging exercise. I made sure I had enough time yesterday morning to load the walker into the car to take along to our weekly physio session and it was awfully sweet watching Sam show off his newfound mobility to the ladies there. Heidi feels that the walker is perfect for Sam and was thrilled at his good posture while walking. She's even already started working on getting him into a standing position on his own, using the walker as support, so that he doesn't have to wait for someone to help him up. Not sure I'm terribly keen on this idea but I am pretty sure it'll take Sam some time to let go of his sensory anxieties and embrace such a massive step towards independence, so take your time little smurf.

We spent last weekend in Stilbaai and were thrilled to find the beach extremely quiet on Saturday morning, despite the lovely weather. Sam, however, was not quite as thrilled though. The sound of the waves seemed to frighten him which in turn added to his fear of the water and he was not loving the feeling of the sand on his skin. So we had to take turns sitting under the umbrella with him. Despite his distaste for the sea sand, Sam actually managed about five minutes of sitting unsupported on it which makes this whole sitting-aversion increasingly interesting...and baffling at that. So sitting on the hard, cold bath surface is in (without any water), as is (apparently) detestable sea sand and (only our) bed (still somewhat understandable). But sitting on the physio's spongey matt is out, as is the soft rug? Am I the only one struggling to see the pattern here?

Snuggled safe in Dad's shoulder, protected from the wind and scary sound of the waves

Hands thrown up in a defensive startle reflex (from the sand) which quite often lands a pretty forceful blow to the face of the person holding Sam

Sammy and Oupa

Early Morning Grins

This moment was quite something...Sam not only taking a bottle from someone other than myself (and very occasionally Chris) but during a rather bumpy car ride.

Sam was playing with his empty Kiddy-Calm bucket in the bath last night, kept studying the letters on it (we have "school" every day at home which includes numbers, shapes, colours, signing, letters, etc) and then signing "Daddy". After a while I'd realised that he'd recognised the "..ddy" from the word "daddy". It's so exciting that he's starting to associate and apply the things we learn at home, in every day "outside" environments for eg, he recognises the numbers used to mark tills and aisles in the shops, he recognises letters in shopfront adverts, etc. Me thinks that Sam might not be quite as ineducable as I was told he would be when receiving his diagnosis. What thinks you?

1 comment:

PattyMarch 7, 2013 at 3:09 PM
I KNOW our kids are much more educable than we were initially told. Stephen has been able to recognize some words since he was 3. He's working on sight words at home a year ahead of where he is in school. And this child LOVES counting like nothing else. It's just a matter of figuring out HOW they like to learn, you know? I just LOVE seeing Sam in his walker - it warms my heart. :-)
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