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)

Monday, November 22, 2010

Pearly Beach Pics

First things first...we are seeing Prof F tomorrow morning at 9:30am at Red Cross Childrens' Hospital to finalise what's happening with Sam's surgery - Yay! (Definitely not "Yay" for the surgery, which if I could think of anyway to avoid - I most certainly would...but "Yay" for having some more clarity on the hundreds of questions I have bursting from my mind looking for answers - until tomorrow morning when I will, undoubtedly, forget 99 of them).

We had such a wonderful day on Saturday - I am super-pleased we decided to make the trip to Pearly Beach. It only took just over two hours to get there (only?) and although Sam only slept for twenty minutes he was amazing the whole way and didn't moan or cry once (thanks to a whole lotta book-reading, singing, etc). Hey, whatever it takes! He also only slept another twenty minutes on the way back and from the bottom of the pass until we got home (approximately thirty-five minutes) he jumped..and jumped....AND J.U.M.P.E.D!

On the way, just after 7:00 am

We had some breakfast as soon as we arrived and in between that and the wonderful lunch Sammy's Granny and Aunty Alvie prepared for us, there was loads of catching up to do. Uncle Charlie and Granny entertained Sam with some karaoke while I got a chance to eat.

A pic of me and Sam with Granny and Brampa - the very first one, if I am not mistaken, as my folks have been divorced for some time and, living quite a distance apart, we don't get many opportunities to all be together.

Brampa, Uncle Charlie, Aunty Alvie and Granny and Sam,of course.

Sam was in his element...a whole new set of cupboard doors, room doors and security gates to be opened and closed. We've decided that Sam could possibly have a future in any of the following careers...a doorman, a SABS engineer (testing door hinges, handles, windows, etc), a dentist or orthodontist...the sky's the limit where our little Smurf is concerned.

What the weather looked like coming over Sir Lowry's Pass (my favourite - NOT), on the way home. Pretty miserable.

And if there is anything...and I mean ANYTHING lying on the floor...big, small, round, flat, breathing (poor kitty) - you name it...Sam takes it for granted its been put there purely for him to first kick and then try and stand on it.

Meg made a beautiful Happy Birthday card for her granny (the pink one on the left).

Now I am off to go write down all my questions for tomorrow morning.....just have to try and remember to take the darn thing with me when we leave!

P.S. Sam has been asleep for the last two hours and eight minutes...and, yes, I have checked several times to make sure that he is actually still breathing :)

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