SAM...MORE THAN A CONQUEROR: This time last year........

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)

Saturday, December 25, 2010

This time last year........

Found this pic taken at BCC Christmas Dinner last year. Well, the physical changes are obvious like the extra four kg's we now carry around on our arm and the ten new teeth, which were nowhere to be seen then, but it's the changes not visible to the eye which are amazing like Sam's much-appreciated appetite for food...and sweet goodies too, his being able to sit, starting the motions of learning to crawl, ever-loudening voice and increasing desire for stimulation and interaction. He's had a busy year, our little Smurf, filled with three chest infections, a couple of viral infections and one kidney infection, five hospital stays, two surgeries, approximately forty-odd therapy sessions and countless upon countless throw-ups, thousands of precious smiles, scores of uncontrollable, tummy-erupting laughing and more sneaky hair-pulling incidents than Meghan cares to remember.

On this our sixth day after surgery, Sam is a little more painful and uncomfortable than the past few days as we've decided to start weaning him off his pain meds so he had a not-too-pleasant night last night and was quite miserable this morning. Instead of having him go "cold turkey" and seeing how upset he was this morning, we've put him back on a half dose of the meds for another day or two and then try again without from Monday. The thing about the meds is that, although I obviously do not want him to have to endure any unnecessary pain, I am a little worried about the affects of having been on them for six days now and am also worried that, while pretty much painfree, he is hindering his healing by being as active and super-busy as always.

Today we are going to try Sam with some sitting up....but in between that, we'll still be.....

Spending time in the pram

and lying around on the "Christmas Bed" we made, watching tv or

playing keyboard with Meg and Dad

Lying under the grapevine while dad takes care of the OCD knocking for Sam

Having Brampa and Meg sing Mickey Mouse Clubhouse songs

Sam's "sore" area which has somehow managed to stay pretty much in tact considering the amount of rough and tumbling Sam has put it through - quite remarkable.

And just a random pic of our precious little boy!

We are very relaxed and low-key today, my mom is coming down tomorrow to spend a couple of days with our family and, of course, to see Sam. So, to all our family, friends and loyal followers - we wish you a Blessed Merry Christmas and thank you for being a precious part of our journey so far.