SAM...MORE THAN A CONQUEROR: AND.......WE'RE BACK!!!!

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)

Sunday, March 21, 2010

AND.......WE'RE BACK!!!!

Now it would be awesome to tell you that the reason we have been M.I.A. for the last month or so was that early one bright and sunny morning we were woken up by a guy with a bullhorn shouting “GOOD MORNING DE BEER FAMILY” and who promptly sent us off on a four week vacation (seven days would just not cut it with our house) to Disney World and the Seychelles and whatever other wonderful holiday destinations there are…but alas, this was no doing of old Tye and his Extreme Makeover team. Rather – our dear old PC gave his last 123EX4756504650456XXX Error message and passed peacefully away. He is definitely in a better place, it was a long and drawn out demise with every day bringing with it a new and unimaginable error message. Not to mention the frustration for dear ol’ Mom who would spend like an hour or so typing up a new blog entry – which usually means type one sentence, put on nestargel, type another sentence, take off nestargel, type one sentence, add formula and so on and so on. No wonder my blogs very seldom seem to “flow” from one paragraph to the next – and then, just before publishing the post the pc would inevitably crash and burn and there would go my entry. Or I would start downloading my 150+ emails and on email 149 it would just restart itself and there we would delightfully begin at email no. 1 again!!!!

Says Mom : Aaarrrrrggghhhh

And then dear Chris (sorry Love, have to tell this story) first tried to resuscitate old PC with the donation of another hard drive (thanks Ed and Uncle Joe) but in the process managed to delete not only ALL my saved emails and email addy’s but (horror of horrors) every single picture we have of Sammy from like 3 months old to date!!!

Says Mom : Aaaarrrrrgggggghhhhh

But…OH HAPPY DAYS….the arrival of a brand new pc has brought with it the hope of once again having my lifeline to the outside world being connected. I have missed reading all the blogs of our wonderful RTS family and gathering as much info as I can from the RTS email list.

So, back to the reason we are ultimately here, our little bundle of joy….Grumpy Smurf. Actually, Grumpy Smurf is not doing too shabby lately. The past few days have been a little cooler which makes HEAPS of difference to his mood. He is still not loving solids but tolerating it and has managed to bring his weight up to 6.3 kgs which is HUGE for Sam….and even measured 63cm on Friday (hey, that’s only 90cm shorter than me and I have a thirty-five year headstart on him). He had another appointment with the ENT and orthopaed surgeon on Thursday and all is looking really well. But most importantly, he is really becoming his own precious little person. He doesn’t sit completely on his own yet, but balances nicely on your knee and “speaks” non-stop now (yip, even right through church service on a Sunday which means I am still bound to patrolling the foyer most of the time). He is grasping things more confidently now and doing some weight-bearing on those tiny little legs and even does, what in his mind, is a little jump (which means he all of a sudden just bring his little legs up) and shrieks with joy. He is just so incredibly alert and alive…every day with him is just such an incredible experience…yes, even the more challenging days J