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...
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 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, March 1, 2011

And it's a "thumbs up"...pardon the pun, if you will :)

Sam had a follow up appointment with his hand ortho-paed this morning (Yay, all clear for follow up appointments until July now). Dr C thinks that Sam's thumbs are looking great although feels, strangely enough, that the right one now appears less deviated than the left, the right one having been the little thumb that was basically making a u-turn just before Sam's surgery. So, Sam had some x-rays taken (well, Sam and I of course) and Dr C confirmed that the thumbs will actually grow straighter as Sam grows. He did though advise that at least fifty percent of the RTS kiddies do require an additional surgery at about 5/6 years of age. Sam did manage to use his thumbs to grasp a pen, which is good news so for now we carry on "as is" and he sees Sam again in a year's time.

Without fail, Sam always falls asleep a maximum of five minutes before we reach whichever doctor we are headed for (a disadvantage I guess of being a fair distance away from most of them) and today was no exception. Sam first fell asleep two minutes before we arrived at the hospital and again, on the way home, he started falling asleep about 1km away from the house but luckily, with Brampies' help (who'd gone with us) we kept him awake. I gave him a bottle as soon as we got inside - at room temperature I'll have you know..a definite first for Sam (think the fact that my car's aircon decided to give in today of all days with the temp hovering at 35ºC  must have influenced Sam's usual fussiness about milk temperature) and within minutes Sam was asleep and is still so almost two hours later. Now would you believe I have to wake him so we can go fetch Meghan...what a way to confuse the poor kid - moan when he doesn't sleep and wake him when he does!

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