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, November 13, 2010

Can you see the resemblance?


Well, its been some time since I last posted a pic of myself so thought "What the heck.....?"

Okay, so there are one or two minor discrepancies like the colour of this woman's hair, the nice frilly nightgown and dressinggown she had time to put on before bed as opposed to the first mismatched pair of pj's she could grab out of an already darkened room shared with baby (although the slipper-less feet are definitely familiar), the absence of the lovely swollen glands, squelchy ear-noises and sore throat that feels like she's been taking her tea with milk and two blades please...the result of leaving a particularly bad case of tonsilitis to, hopefully, clear up on its own (like its known to do?) before eventually resorting to her doctor for a much-loved course of antibiotics..you know, the kind that leaves you feeling about as energetic as a slug who's been taking his tea the same way, but with two puffs of cottonwool as well (always reminds me of that movie with Jim Carey called Me, Myself and Irene" where he gets a bad case of drymouth after taking his medication - I can sooooo relate right now). But add another ten teeth to that baby's mouth and you've got the splitting image of Sam (give or take a shattered window pane or two which usually comes hand-in-hand with Sam's high-pitched screaming). Oh...and of course...that glorious head of hair is missing!

Seriously - we're having a really interesting time as, apart from my tonsilitis, Sam is becoming increasingly more fussy, a time when Mom kinda needs to be on her best form for. I keep thinking that perhaps he's caught some of my germs and is battling with a sore throat or earache or something, so took him off to the doc on Thursday morning just to make sure but she could find no signs of infection or anything nasty at all, other than his rather swollen mouth as the result of cutting, now, three molars. So, I am really hoping that it is merely his teething causing all the drama at the moment, but still remain sceptical because his reflux is also giving us a run for our money at the moment, literally...new carpets plus freshly peaking-reflux = not the greatest of scenarios. Another worrying factor is that, although it is one of the most common RTS conditions, Sam never really did battle with constipation as I know many of his RTS siblings have. However, this seems to be changing as even though I am giving him the maximum amount of Duphalac he can have on a daily basis, his tummy is really giving him some problems - something I know can aggravate reflux as well. So we bought some Movicol this afternoon, of which Sam has had his first dose, and are hoping it solves at least this problem.

As for the rest of the clan, the girls are practising frantically for their Christmas Concert taking place on 5 December, as well as wrapping up all the end-of-the-year activities like assessments, class/extra-mural parties, etc. while I count down the days to our next appointment with Prof Fieggen on 22 November. Luke is being...well...Luke, which doesn't involve a whole lotta anything other than playing playstation, playing pc games...(the usual 17 year-old-boy-stuff). Sammy's Granny (my mom) is coming down next week Thursday (which also happens to be her birthday) from Pearly Beach, for a couple of days so we are really looking forward to that and then Sammy's Ouma and Oupa (Chris' folks) are coming down the following weekend from Stilbaai for a visit as well. Last year we made an effort to spend some time in Pearly Beach and Stilbaai but we are not sure what Sam's recovery is going to be like after the surgery so have decided to just play it low-key this year and stay at home :)
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1 comment:

  1. Jodie means Grace of GodNovember 13, 2010 at 10:07 PM

    HI Nicky
    Just a little feedback on Jodie's constipation as we stuggled for months with enema's etc, with the help of the RTS family, Jodie's constipation has cleared up now for about 5 months. We have changed her milk to pediasure... this also assists with the growing. We havent been using duphalac at all, maybe ask your paed?

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