SAM...MORE THAN A CONQUEROR: Little Mr Smarty Pants

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, June 26, 2014

Little Mr Smarty Pants

There is a song...about balloons... and colours...on Youtube. It is called... wait for it..."The Balloon Song (for learning colours)". Go have a listen. I did try download the link so I could share this delightful song with all of you but it automatically starts playing this song of delight and as the lil dude is lying sleeping next to me I can think of nothing more irritating right now than having him wake-up and demand to hear The Balloon Song.

And demand he will because Sam listens to The Balloon Song on average (and no,
this is no exaggeration) about 50 times. Each and every day. And while I don't deny the role The Balloon Song has had in Sam learning his colours, it does not take away from the fact that it is the most stuck-in-your-brain-like-no-other-song-in-the-history-of-all-songs kinda song. And yes, at random intervals throughout the day we will all find ourselves, to our horror, singing The Balloon Song.

And yet still, none of us have quite memorised the correct pattern of the song as Sam has. On Thursday evening Sam and I were enjoying our usual bathtime singalong and started on our first rendition of TBS. I sang 'red balloon', Sam signed 'red balloon'. I sang 'blue balloon', Sam signed 'blue balloon'. I sang 'green balloon', Sam signed 'white balloon'???

Uh no Sam... it's green after white. Started over but the same thing happened. And again. Eventually I asked Meg to bring me the iPad so I could help Sam right. The song started (feel free to sing along folks)

'Red red balloon, floating in the sky.

Blue blue balloon, floating up so high.

(See? The lyrics are riveting!)

White white balloon.....'

Say what? What happened to green? Oh pish posh. Green? White? What's the big diff anyway? Lol!

Only after did I think about the dangerous can of worms I might have opened by bringing the iPad into the bathroom but thankfully there was no request of this kind from Sam the following night. And nevermind twinning (a fascinating quirk RTS peeps have which requires that they be, for instance, watching the same movie on their iPad and the tele at the same time) Sam has now acquired Tripling... with TBS on tv, on his iPad and homemade balloon flashcards for that extra tactile effect!

We've had a bit of a disappointing setback with Sam's teeth. Sam was meant to undergo a dental procedure this coming Wed to (finally) remove that little chipped front tooth (little as in milktooth and the minimal amount of actual tooth left after being ground right into the gum by the bottom tooth). However the dentist's office phoned on Friday morning to say that there's been some or other misunderstanding and Sam's procedure has been rescheduled for the 23rd July. What??? I'm having to keep the kid on 4-hourly doses of painmeds to limit the amount of mouth-bashing and obvious pain and discomfort he's in. Just waiting till the 2nd was gonna be a long stretch, how will he manage till the 23rd. Very distressing indeed. We all know how awful a toothache can be. So we're trying to get another anaesthetist on board who might be able to fit Sam in on the 11th July... please hold thumbs that this works out and he doesn't have to endure another 25 days with this wretched tooth :(