SAM...MORE THAN A CONQUEROR: Tis the season to be jolly and thankful...

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, December 21, 2015

Tis the season to be jolly and thankful...

...or so they say.

A mere season within which to be jolly? Maybe. A mere season within which to be thankful?

Impossible.

Sam deals with a few more challenges than the average kid, so you'd expect me to be super aware of becoming complacent about the things he does not struggle with...breathing, sight, hearing, oral feeding, reasonable mobility (albeit it knee-walking)...but yet every couple of days the universe throws a reminder at me about the countless difficulties we do not have to deal with and, more importantly, a reminder to be unceasingly thankful for, what is to many, countless blessings.

Becoming a part of the Daniel and Friends Fund was already a mind-altering revelation for me into how much more of a formidable journey many families are facing and quickly put into perspective our own challenges. But oh, the Universe was not yet done with me. Getting to know and love these families whose children battle conditions like Spinal Muscular Atrophy, Congenital Heart Disease, Spastic Quadriplegia and chronic, heartbreaking Epilepsy, where having 20 seizures a day before the clock has barely struck 10am is the norm, was not yet enough insight. No, the Universe concluded, you need to see more.

And so our paths led us to the Sive Nathi Licensed Home in Blackheath, a home which provides fulltime care to 40 children who suffer with severe disabilities (mostly Cerebral Palsy). Not only do these children face profound challenges each and every day, but they do so without the comfort and nurturing of being part of a conventional family. Mostly abandoned (due to the inability or unwillingness of their families to take care of them) the children at Sive Nathi Home know only the facility's carers as the consistent adults in their lives.

Of course I knew facilities like Sive Nathi existed, but to go in and see the little faces...touch a fragile little hand...smile into a heartbreaking pair of eyes, was just something else completely. Yet still, despite circumstances most of us could never even imagine, there were plenty of smiles and heartwarming clips of laughter.

Don't take things for granted...there's always someone worse off than you...you never know what kind of battle someone else is fighting - all sentiments expressed regularly, often too lightly. It's fairly easy to entertain these thoughts "from a distance" but not that easy to comprehend completely until you've had the opportunity to witness these struggles up close and personal. And, yes, I say "opportunity" because that's exactly what it is...an invaluable experience for those who occasionally find themselves wishing their lives were on a different path, to be able to surrender to some necessary self-reflection in order to appreciate that that "different path" might be one far more challenging.

Our visit to Sive Nathi is shared in more detail with quite a few beautiful photos at Daniel and Friends Fund BlogSpot, but one of my absolute favourites....