SAM...MORE THAN A CONQUEROR: Smurfville goes GREEN!

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, March 26, 2012

Smurfville goes GREEN!

Unfortunately not the eco-friendly kind...Meg started off the school holidays full of smiles and chirps after presenting her usual "A" aggregate report card, for which I can take no credit for as, with Sam's health been a little challenging over the past couple of months, Chris was the one who helped Meg prepare for tests, etc. I do have to say that I was a little surprised (and admittedly, a little impressed) that Meg still managed a good report because, apart from the fact that Chris goes alot easier on her than I do (if she gets something wrong I make her write it out a good few times and then recite it back to me a good few times and repeat-repeat-repeat if she still gets it wrong, while Chris will calmly say "You must just go over this-and-this again, okay?" to which Meg, with her hand already reaching for the remote control will go"Okay"), Meg's learn-a-phobia seems to increase with the onset of each new term. There is a life lesson just waiting to happen here...just not sure who is supposed to be learning it???

Friday's visit for Sam to the ENT had quite an unexpected outcome (more about that later) and so we decided to venture out for a super-quick breakfast on Saturday morning. Off we went bright and early to a (very) nearby restuarant in case Sam did not cope well with the outing and loaded with iPad, portable dvd player, a minimum of ten books and other smurf-entertaining-paraphernalia...love the advice and tips gratefully sourced through the RTS listserv. And ironically, Sam was probably the most relaxed person at our table. We arrived really early so there were hardly any other customers, quickly placed our order and then, to our dismay, within minutes the place started filling up, which sudden rush brought with it a mom and her son who were placed at the table right next to us but before even sitting down, were both coughing and sniffing quite worringly...for us, at least. Swift change into super-speed mode as Chris and I gulped down our breakfast and drinks as quickly we could to be suddenly interrupted by Meghan complaining of stomach cramps and running off to the bathroom. Chris and I sat there for what seemed like hours, beads of sweat rolling down our foreheads and eyes frantically searching for the return of Meghan's blonde head so that we could quickly escape (I might be exaggerating just a little...but really, just a little). After ten minutes I decided to go in after Meg (a real challenge for me as I do not do public toilets unless it is an emergency...and in this case an eleven year old girl who has previously locked herself into a cubicle at McDonalds and only come out after a staff member had to climb over the top of the cubicle to let her out....not returning after so long was definitely an emergency). And there I found Meg, "playing steering wheel-steering wheel" with the toilet seat and insisting that she could not stand up without throwing up! To the amusement of the entire restaurant (because the toilets just have to be at the very back of the place) we left just minutes later, me carrying smurf and the contents of half our household and Chris carrying Meghan! I am chuckling to myself quite hyserically as I type this because it just had to look so terribly funny...but trust me, at the time it wasn't. So, after Meghan's shoe-fiasco last week (can't remember if I posted about it) and Saturday's events, Sam can no longer be held solely responsible for all our family's embarrasing moments.

It wasn't barely two hours later when I too started feeling nauseaus and so the remainder of our weekend was dominated by yet another bug.

And so sad too because, after Sam's ENT appointment on Friday, it seems that perhaps Sam's system is/was in fact on the mend. After the usual greetings and niceties exchanged with Dr V I gave him a brief rundown of how I'd had Sam at the doc just eight days earlier after noticing that Sam's tonsils were swollen and had several little white follicles on them, advised him of the course of Orelox (for once, completely and successfully administered to Sam in its entirety) and then noticing just the day before that the tonsils looked exactly the same. While gesturing for us to take a seat so that Dr V could take a look, he advised that a second bout of tonsillitis within five weeks was definitely a reason to remove them.

He had a quick look in Sam's ears and reported that they look great (WooHoo) and then looked in Sam's mouth (amidst the usual amount of gagging and protesting of course - Sam's, not mine) and said "Mmmm...but the tonsils aren't even slightly red, so he definitely doesn't have tonsillitis now!" to which I replied, "But this is exactly how they looked last week when I took him to the doc!!"...to which Dr V replied, "But then he probably didn't have tonsillitis then either!!"

I managed to compose myself just long enough to retrieve my jaw off the top of Sam's head to say (rather intelligently) "HUH?"

I managed to hear snippets of Dr V explaining to me that although Sam's tonsils are definitely still very swollen and do in fact still have a few follicles on them, it is more than likely just residue from the really bad tonsillitis Sam had mid-February...but in actual fact, all I could think about was the fact that, probably for the first time EVER, I had managed to get an entire course of antibiotics into Sam...and it had all been for N-O-T-H-I-N-G!!! Seriously? Anyone got a shotgun I can borrow? It's time me and that darn Murphy had us some words!

Anyway...moving swiftly along...despite the hour of travelling to-and-from the ENT for a barely eight minute, not-terribly-exciting consultation...the awesome part about all of this (apart from the obvious relief that Sam's tonsils don't have to come out just yet) is the hope that Sam's immune system is possibly, with the help of the Zithromax I presume, managing to recover...let's hope I don't have to change that last statement to "Sam's immune system WAS recovering" after the twin-tummy-bugs Meg and I were entertaining this weekend!!!