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)

Sunday, June 20, 2010

MUSHY SQUISHY PORRIDGE BRAIN & THE TOOTH

You know how when you're pregnant and start becoming extremely absent-minded or just plain forgetful, you always blame it on your "porridge/nappy/poop" brain. And then when the baby's born and you're still absent-minded and forgetful, you still blame it on your "porridge/nappy/poop" brain. Well, I'd like to know what you call it when you are no longer pregnant and the baby's already 13 months old and you are STILL absent-minded and forgetful? Well, whatever it is you call it (and no, I am not going with "dimentia") I most definitely have it. For like the last few days I have merrily been counting down the "20 days" until Sam's wires come out. 20 DAYS? From the 14th June until the 12th July.....20 DAYS? Alrighty then....so instead of having a leap year this year, we're having a PAEL year where you actually lose a day (or seven)! How awful it was when the light bulb spluttered into life on Thursday and I realised I'd been calculating incorrectly (and for all the world to see on Sam's blog, no less). It's like when you lie in bed one Friday morning, dreamily planning what top you're going to wear with your jeans (it being Friday and all) and then all of a sudden realise its only Thursday (mmmm...well if this hasn't happened to any of you - what do you call it when you're not pregnant, have not recently had a baby, are not even thinking about having a baby - but you're still absent-minded and forgetful?)



So, if the miscalculation in the countdown to W-Day wasn't bad enough. On Thursday evening, after little Joyful Smurf was down for the evening, I finished with the usual regime (making milk, washing bottles, etc) and afterwards decided to pour myself, Chris and Grampies each a glass of lovely sweet, gut-warming Muscadel (a type of fortified wine). I opened the cupboard, selected one of the only two bottles there and poured myself a very tiny tot (the thought of having a nightcap is always more appealing than actually drinking the stuff), set mine down on the counter (or bookcase....or desk...or somewhere among the four or five cups of tea I misplace every day) and handed the men theirs, who were watching tv in the near-dark. Next thing Grampies was coughing and spluttering and Chris' face contorted and he asked what I had given them. Naturally I first insisted that it WAS Muscadel and then ran to the kitchen to promtly read "Brandy" on the bottle - I had given them each a nice big ol' glass of neat Brandy! Not the same smell, not the same consistency, not even the same colour as the Muscadel...and they'd each taken a generous mouthful, expecting the much more gentle taste of the Muscadel. It was sooooooo funny - well, for me at least!



So, onto someone whose brain is far more alert than mine - on Friday Sammy was sucking on a quite thick shortbread cookie. Next thing he'd bitten the whole corner of the cookie off (the "whole" corner being about 0.5mm in diameter). I kept wondering, while desperately trying to fish the crumb out of this mouth, how he'd managed to bite through such a thick biscuit with just those little toothless gums. Later that day Sammy was sucking on a marshmallow when I noticed a disctinct little "hole" in the marshmallow and what do you think I found in his mouth? The teeny weeny tip of a tooth!!!!! Our little tooth is not growing at a very rapid pace so it's not quite yet "photo" material, but at least we know its there which is just as good for now!



Sammy was "flipping" the label of his pillow (after wrestling the pillow case half off as usual) back and forth this afternoon and, low and behold, fell asleep mid-flip! This doesn't happen every day (not just the flipping, but the falling asleep during the day) so had to take pic.

This is a "before" photo I took of Sam's splint on Tuesday. I will take the "after" pic tomorrow - you need the twenty-four hours to prepare yourselves. Lets just say that white was not the best way to go for a little baby whose almost every meal contains lovely, bright-orange creamy carrots (yes..with honey) and who is still persistently trying to suck his thumb. We are going into the OT's tomorrow so they can just double-check that the splint is still fitting correctly and I cannot tell you how embarrassing it is going to be having to produce such a terribly stained and half-sucked splint compared to the lovely clean one we left with last Monday. In my defense, and I know this might be hard to believe, but it is anatomically impossible (well for me at least) to have one hand manouevring a feeding spoon amongst the King Kong-swatting-the-plane like action of Sam's arms, one hand holding the bowl and still find another hand to restrain those propeller-like arms.

Thank goodness there's only 15 days to go till W-Day....LOL!

2 comments:

  1. I'm sure they would be SHOCKED if you brought in a clean splint, Nicky, so don't beat yourself up. Great development Sam...so excited you figured out how to use that emerging tooth!

    ReplyDelete
  2. Yay for teeth!!:) and i'm Forgetfull a lot of the time too so dont feel bad:P I love the picture of sam flipping that tag he reminded me so much of Jesus, Jesus loves fliping tags or papers or anything that will move. :)

    ReplyDelete