SAM...MORE THAN A CONQUEROR: Desperately Seeking my Mojo

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)

Tuesday, January 1, 2013

Desperately Seeking my Mojo

Smurfy wishes for an awesome 2013 everyone :)

I seem to have misplaced my blogging mojo a few weeks ago. It's quite possible it got washed out with the litres-upon-litres of vomit (bleghhh) we were shovelling four to five times a day towards mid-December, when Sam struggled through possibly one of his most health-challenged periods. After 9 days of unbreakable fever, no eating, loads of slime, coughing, croup and of course the relentless v-wording it felt like we'd never see a healthy Sam again.

Needless to say, this trial too passed and Sam was healthy enough for us to go spend a few days in Stilbaai with family.

While Sam was sick, the only activity which seemed to keep him calm and comfortable was "going ta-ta" so at least once a day, after he'd gesture towards the garage waving his little hand eagerly, we'd take Sam for a no-destination drive. Thankfully the "ta-ta bug" was still biting on the way to Stilbaai so Sam had no trouble enduring the lengthy 4 hour drive.

Sam's been prone to lovely 2hr-long afternoon naps lately and with Dad being on holiday too, he eagerly took advantage

Meg and Chrisna waiting for the 2hr-long nap to end so that they don't have to be on noise restrictions any longer

Sam loving the 3-way chair enjoyed by his uncles and cousins over the last 35 years (Yes, really). Sam's Buzz Lightyear car had to of course be brought with, along with several other toys and favourite dvd's, to keep Sam's environment as familiar as possible.

On Friday afternoon we drove out to Sam's cousins, Cayla and Dewald, in George.

Sam was keen to join them in the pool but settled instead for some sideline flapping which left him just as wet anyway

Both Dewald and Cayla insisted on giving Sam one of each of their toys. From Dewald Sam got this really awesome light making, noise emitting, vibration yielding object.

And from Cayla, one of her babies :) to keep Sam company along the 2hr drive back to Stilbaai, along which Sam finally lost his "ta-ta bug"

For the first time in a long time, Sam had a really good night's sleep on Friday night.

Which meant we could hit the beach before 8am already to avoid both the extensive crowds and sweltering heat

All beached out and ready for breakfast in his Smurfy towel

Sam slept really well on Saturday and Sunday evenings, waking just before 10am yesterday morning. He was so keen to see the New Year in though that he was awake from just after 12am till just before 5am this morning...but is making up for it by still laying fast asleep right now.

Enjoy your New Year's celebrations everyone....here's hoping I stumble across that darn blogging mojo soon xxx