SAM...MORE THAN A CONQUEROR: Pearly Beach Pics

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, November 22, 2010

Pearly Beach Pics

First things first...we are seeing Prof F tomorrow morning at 9:30am at Red Cross Childrens' Hospital to finalise what's happening with Sam's surgery - Yay! (Definitely not "Yay" for the surgery, which if I could think of anyway to avoid - I most certainly would...but "Yay" for having some more clarity on the hundreds of questions I have bursting from my mind looking for answers - until tomorrow morning when I will, undoubtedly, forget 99 of them).

We had such a wonderful day on Saturday - I am super-pleased we decided to make the trip to Pearly Beach. It only took just over two hours to get there (only?) and although Sam only slept for twenty minutes he was amazing the whole way and didn't moan or cry once (thanks to a whole lotta book-reading, singing, etc). Hey, whatever it takes! He also only slept another twenty minutes on the way back and from the bottom of the pass until we got home (approximately thirty-five minutes) he jumped..and jumped....AND J.U.M.P.E.D!

On the way, just after 7:00 am

We had some breakfast as soon as we arrived and in between that and the wonderful lunch Sammy's Granny and Aunty Alvie prepared for us, there was loads of catching up to do. Uncle Charlie and Granny entertained Sam with some karaoke while I got a chance to eat.

A pic of me and Sam with Granny and Brampa - the very first one, if I am not mistaken, as my folks have been divorced for some time and, living quite a distance apart, we don't get many opportunities to all be together.

Brampa, Uncle Charlie, Aunty Alvie and Granny and Sam,of course.

Sam was in his element...a whole new set of cupboard doors, room doors and security gates to be opened and closed. We've decided that Sam could possibly have a future in any of the following careers...a doorman, a SABS engineer (testing door hinges, handles, windows, etc), a dentist or orthodontist...the sky's the limit where our little Smurf is concerned.

What the weather looked like coming over Sir Lowry's Pass (my favourite - NOT), on the way home. Pretty miserable.

And if there is anything...and I mean ANYTHING lying on the floor...big, small, round, flat, breathing (poor kitty) - you name it...Sam takes it for granted its been put there purely for him to first kick and then try and stand on it.

Meg made a beautiful Happy Birthday card for her granny (the pink one on the left).

Now I am off to go write down all my questions for tomorrow morning.....just have to try and remember to take the darn thing with me when we leave!

P.S. Sam has been asleep for the last two hours and eight minutes...and, yes, I have checked several times to make sure that he is actually still breathing :)