Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
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!

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  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. :)

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