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)

Tuesday, July 13, 2010

LOOK MA, NO SPLINTS!

Heeeeeehaaaaaa!!! (Said in true Jessie-from-Toy-Story-Style)..Sam's splints and, more importantly, wires are gone since yesterday afternoon at 12:45 and all is good....REALLY GOOD! The pulling of the wires went so well, we were in and out of Dr Carter's rooms within 15 mins and, apart from a slight flinching, Sam didn't experience much discomfort and certainly no pain, at all. The thumbs still look a little "puffy" which seems to be partly some residual swelling from the procedure and partly because of the excess soft tissue but other than that the actual cuts look great and already the scars are fairly unnoticeable. So, as per doctor's orders, it was back to normal immediately...and we started off, of course, with a bath and (shout for joy) no plastic bags, clingwrap, cellotape and all the other accessories/contraptions we've become used to over the past few weeks. There's still a little bit of dead skin around the thumbs but already by this evening most of it seems to have been washed away.
Now you see them........now you don't!


Sam looks really happy to have his old "fleshy" thumbs back as opposed to those awful plastic thingies we had inconsiderately strapped to his hand..tsk tsk!
And of course the first place that thumb went (leftover blood, stitches, gauze and all - yum) was in his mouth and with wasting no time mind you - on the ride home!
I tried to get a better pic of what his thumbs look like but trying to get ol' Joyful Smurf to keep his hand/s still is not that easy, so this was the best I could do.
Well, it feels so great to be on the other side of Sam's very first surgery and now I also know that, should another thumb surgery be on the cards, I can definitely anticipate it with a whole lot less anxiety and fear! (Notice I say "thumb" surgery....any other surgery will more than likely cause the same amount of panic....Hee Hee).
So, what else has been happening? Sam seems to be getting a bit mucousy and croupy again...I am just praying that it goes no further than what it is now and we have our last Synargis injection for the season tomorrow so maybe those antibodies will give any germs a blasting (not even sure if it works like that, but here's hoping). When I fetched Chris from work on Friday afternoon I took the whole troop with me into his office and of course Sam LOVED the attention...all the ladies were standing around him and he just adored it and mustered up every bit of charm he could. He is definitely one attention-loving babe and knows just when to smile and play coy - do I see a casenova in the making? I thought that it was impossible to have a child that could be anymore "busy" than Meg but it seems as though, as unexpected as what it is, Sam might be proving me wrong but its an AWESOME unexpectedness I must add. There is not 5 mins of the day when he can be left alone without someone dancing with him, playing with him, singing to him (I've still to post my Sam-adapted versions of Wheels on the Bus, Old Macdonald and BINGO)...Sam received an awesome CD from his Aunty Vanessa for his birthday called Silly Songs which are mostly all the favourite kiddies songs but tweaked a little to include a Christian element, and Sam loves this CD. So, as tiring as what it is to keep up with him, his mind constantly sponging up every bit of stimulation/interaction and then asking for more is just an indescribable feeling at the moment. Sam was lucky enough to have a second "birthday" when his Granny and aunts, uncles and cousins came for a visit and hit another jackpot with some stunning birthday pressies...thanks again guys, with a special thanks to cousin Amy (another blog in the process - more soon) who specially picked out a beautiful outfit for her cousin Baby Sam!
On Saturday afternoon Meg, Chrisna and I went to watch Toy Story 3 which the girls loved but I felt was a little bit "violent" towards the end. The girls didn't seem to notice much so it all turned out well. On Saturday it is Chrisna's 8th birthday and we are going ice-skating - hope they have a size "tiny" ice-skate for Sam (what a better way for him to work off his energy). And of course today was back-to-school for us here in Cape Town, after 5 weeks of holidays.
"HAPPY ARE THE PEOPLE WHOSE GOD IS THE LORD!"
Psalm 144:15
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3 comments:

  1. CindyJuly 14, 2010 at 4:34 AM

    That's wonderful news! Way to finish ahead, Sam!

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  2. janina schutteJuly 14, 2010 at 9:33 AM

    hi sam you look so gooooood a real charmer with those eyes!!!!!love u lots

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  3. antheaJuly 14, 2010 at 9:12 PM

    Hi Nicky and Sam Granny says hello gorgeous boy you are so brave and strong and I love you. We are so blessed to have met you and will never forget the day. Have lovely pictures now and do so enjoy reading about all your tricks especially your love for the ladies, Mom is right your are going to be such a charmer. Lots of love Aunty Anthea and Amy

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