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, February 2, 2012

A quick update on our bathing saga : after my last post I decided to just persevere with getting Sam into the bath so for two nights, although it took a fair amount of time, I patiently tried...and re-tried...and tried some more until I eventually managed to get Sam sitting. There were moments of hairpulling, neck-clutching, skin pinching panic...from both sides! Just kidding! Of course just from Sam's side! And one near-accident when the mat I was twisting and contortioning on suddenly slipped, but after a moment or two's uncertainty, Sam would start his usual sing-songing bath routine as if he'd been placed calmly and happily there. Tonight, low and behold, he went in with about half a second's hesitation! Woo Hoo...bathing fears conquered...just hours before we're about to subject him to another traumatising surgery, which will leave him bathless for a couple of weeks and we'll be right back at square one. *Sigh*

We almost didn't get the go-ahead for Sam's surgery tomorrow. I mentioned in my last post that Meg was down with a pretty potent stomach bug and that I was a little worried that Sam might catch it. I was quite firm about Meg staying pretty isolated in her room, at least until yesterday when she was feeling well enough to go to school. Last night, at about 9:20pm Sam started throwing up and carried on until the early hours of this morning. By about 5:00am I had almost decided that actually going in to Dr S to have him check Sam out for sugery was nothing more than a waste of time. But by 8:30am this morning Sam had managed to keep in the better part of his bottle as well as a little bit of porridge so off we went to see Dr S. Dr S was initially also fairly unsure about whether Sam would be okay for surgery, but by the end of our consult he felt that we should give Sam a few more hours before cancelling, with the help of some Zafron Wafers and Stopayne for the cramping. Sam had one or two gag episodes in the afternoon, possibly due to his swollen glands and slightly red throat but there was no vomiting and although he was battling a little with his bottles, he was mostly finishing them. So just after 3pm it was decided that we would not cancel tomorrow's op.

At the risk of sounding a little prone to MBPS (Munchausen by Proxy Syndrome) I have been quite desperate for Sam to undergo the orchidectory, not because the fact that he's having his fourth surgery in just a mere 19months doesn't bother me (because it does - a whole lot) but, as I've often shared, I have a feeling that some of his SPD could be related to the sensitivity or just plain discomfort of where that right testicle is sitting. Having said that, though, I would detest to make the process even more traumatic for Fearful Smurf by having him try to recover from both the surgery and the nauseau and tummy cramps associated with the tummy virus at the same time.

Thankfully Sam does seem a little more comfortable than he was this time last night (and just as I typed this line he started crying, probably due to his having just vomited in his cot - oh dear, Murph, gimme a break why don't you). So a quick ending to go clean up some puke! Yay!

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