SAM...MORE THAN A CONQUEROR: WORLD CUP FEVER!

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)

Wednesday, June 16, 2010

WORLD CUP FEVER!

As you may or may not know...South Africa hosting the Soccer World Cup is in full swing. Well, if you're South African you most DEFINITELY know by the unrelentless blowing of vuvuzela's, regardless of the place or time. So, we decided to get into the patriotic swing of things and adorn our car (and selves) with some Fifa decor. (I must add that some of these picture were taken under great duress).

Sam got it all a little mixed up and thought he was taking part in some sort of pirate dress-up story "Aye Aye Matey....where's me patch?"

"What? No pirates? Well thats something to smile about."

Aaaannnddd....we're still doing the clingwraped/freezer bagged bathing - although I am not sure how much longer we can keep it up. With all the funny acrobatics and gymnastics it takes for us to undress Sam, bath him and get him dressed again while all the while holding those two extremely active arms still, our bodies are being stretched into angles not meant for human formation. If it was Summer it would be easier to just give him a sort of mini-shower in the bath, but alas it is not Summer and pretty darn freee-e-e-z-zing. I've even threatened to go by 20 different babygro's and vests (20 being the number of days until the wires come out of Sam's thumbs) and at the end of each day simply cut the clothing off him. Luckily we've not yet reached such desperate heights.

On a more serious note - we had a bit of a setback at Sam's appointment with Dr Carter on Monday. In between removing the old dressing and putting the new ones on, the wire in Sam's right thumb (which sticks out slightly from the tip of his thumb with a little hook to prevent the pin becoming covered by a layer of skin and also making it easier to remove the wire when the time comes) became hooked on Sam's jumper and of course, the second he moved his hand the wire pulled out by 5mm or so. Sam howled in excruciating pain and it took forever for us to settle him down again. Dr Carter reassured us that it would not cause any problems with the healing of the finger as the wires go quite deep into the thumb, but obviously the accident has now made the thumb even more tender and painful for Sam. I think I had also set my expectations a little too high with regards to the result I thought we'd see and so when I saw that Sam's thumbs are really quite far from being straight, together with Monday's little accident I just sunk into an awful pit, filled with self-reprove for making the decision to have the operation in the first place. But, thankfully, I have a wonderful friend in Jacqui who in a caring and loving manner, reminded me again of the overall benefit of having the operation. So, although it will be a little sad if the procedure has no immediate effect on Sam's thumbs, it does mean that they should not become any more angulated with age, which is what they were doing before.

So, we go back to the OT's on Monday just for them to do a quick check-up on the splints they made at our last appointment (which was obviously done under rather traumatised conditions) and then back to Dr Carter again for the removing of the wires on the 12th July. Yaaahhh! Sam is just not loving having to suck on the splint, although he has kind of settled on that for now. Chris suggested we go buy a cheap doll somewhere, cut off the thumb and attach it to the splint so that it might feel a bit more authentic for when Sam's sucks it, but it all seemed a bit too "Chucky-like" for me. One good thing about having the bandages off is it's far easier to go out in public. You won't believe the looks we'd get from people, walking around with this tiny little baby, completely bandaged up to his elbows. I was so close to just printing out a little note and attaching it to Sam saying "Please Note - the infant attached to this notice has undergone necessary hand surgery in order to rectify the angulation of his thumbs due to his having Rubinstein-Taybi Syndrome and has in no way been abused or mistreated by his parent/s. For further confirmation kindly contact Dr Carter at Life Vincent Pallotti Hospital or kindly soften the accusing look on your, otherwise, friendly face." For once, Samuel being so tiny was an advantage because with that note attached to him, passersby would instead be walking around bewildered thinking "Infant? What infant? All we see is a piece of paper being carried around like a baby by some dodgy little woman."

Other than that, the holidays are dragging drearily by but we have Father's Day to look forward to on Sunday as well as Sammy's Granny from Pearly Beach coming down for a visit. We haven't seen her since December so it will be great to catch-up and for her to see how much Sammy has grown.

And, on that note - a word from our sponser (or rather a look) - the one, the only, the exhausted (from yet another day with less than 20 mins napping).......SAM THE CONQUEROR! (Can't you just see how full of life and laughter he is by the time it gets to late afternoon).