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)

Thursday, November 17, 2011

A surgery-free Xmas!

The big news for now is that Sam's surgery, tentatively scheduled for the 14th December, has been postponed until early-January. I say "big" news as opposed to "good" news because I am not entirely sure how I feel about the change of plan...it's really kind of bitter-sweet. I have to be honest and say that I've had an incredibly uneasy feeling about the upcoming surgery. Possibly because, as mentioned previously, it was scheduled to take place the day before year-end shutdown, not made any easier by the struggle to secure an anaesthetist we are 100% comfortable with but certainly also effected by the unexpectedly traumatic experience Sam's little RTS brother, Jesus, recently endured which had our RTS family all round the world glued to FB for a number of days, eagerly awaiting updates which would report that this little angel boy was finally out-of-the-woods and recovering.

That said, we were all looking forward to finally putting the whole testicle-in-limbo saga behind us. It does sound sort of amusing when I put it like that, but it has been somewhat of a challenging and trying episode. On the other hand, we cannot deny the relief of actually being able to make some sort of plans for Christmas this year as opposed to last year when Sam's TSC surgery took place on the 20th December. But on the other hand.........Yip, I'm still pretty unsure about how I feel about the change of plan...maybe if I blog a little longer, it'll become a little clearer.

And a catch-up via pics of what we've been up to over the past week......


We've put together a little "feely" bag for Sam seeing as he seemed to be showing a little less defensiveness in his hands. It has been invaluable having Meg participate in this because watching her have fun with things which Sam would normally shrink away from having contact with, has made it a little easier....


...although having these little balloons (normally an aboluste no-no for Sam) statically fixed to your hair is not really quite the same as having to touch them with your hands....


...but it still made for some fun play.


Meg had the genius idea of putting some of Sam's plastic numbers into the bean container and Sam was quite comfortable fishing them out.


Attentively listening to his big sister's instructions :)


The hand splint which Sam is supposed to wear every night has definitely not been shown any less defensiveness. In fact, it seems to have gotten worse. I though the most annoying problem was that he somehow managed to wangle his little hand out of the three velcro straps. Now when you put the splint on him, he has taken to banging his hand into the side of the cot until you remove the splint. So I decided to show him, with the help of his little stuffed friend, that it's really quite okay for a little smurf to have to wear the nighttime splint!


But this is basically the closest we got to a smurf-tolerated splinting!
One thing's for sure...this little blue guy ain't gonna have any trouble with camptodactyly any time soon.


Samuel is obsessed with his sister...the second she is within reaching distance of Sam he makes a beeline for her. On the upside, he has absolutely mastered his pulling himself up skills and can go from a kneeling position into a standing position in a flash. On the oops-side, Sam's version of "play" at this point consists purely of hair-pulling, pinching and grinding his forehead into hers. Meghan is, for the most part, super-tolerant as she knows that if he knew of another way to play and interact with her, he would. Sam's OT, Pippa, has suggested an afternoon therapy session in the near future with both Meg and Sam so that she can show Meg how to react when Sam approaches, as well as to suggest some sensory-fulfilling "games" for them to share.


Mischievous little grin :)


Sam loves watching himself in the mirror.


A super-sleepy bathtime...which ironically always seems to give him a second wind...


...and just a random pic!

2 comments:

  1. I'm so glad you have a surgery-free Christmas. You need a break, and I hope you enjoy it!

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  2. Now what an amazing plan to get Meg on board as she is super good with her little brother.....beautiful pictures of the play session. Seeing as he loves the mirror another tool in getting him going. With Amy I used the mirror so much especially in getting her legs together for PT, used to spray the mirror with shaving cream and while she made designs on the mirror I was holding her legs in place for ages, a lovely mess it was but very worthwhile. Smurf sure is on the right track maybe he will convince Sam that it is ok...........

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