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)

Wednesday, February 27, 2013

Walking, horses and toe-padding


Sam has his walker *does really goofy-looking smurfy-dance *  (Mom, not Sam) Whoop Whoop!
And he is loving it. So much so that I took this awesome LITTLE video of him taking a stroll down the road with it. But after the video still not having uploaded after almost an hour, I had to conclude that the darn thing was not THAT little after all. Eish. Will try again. Sorry Lynn ;)
At least we have a pic.  We have adjusted the height of the walker somewhat which makes for a much more comfortable gait and way more confidence. At the moment, the wheels can only go straight, which we thought might be a good idea at first so as to avoid Sam having some rather damaging (to both himself and the household contents) bumper car episodes. But alas, the little dude is becoming very frustrated at not being able to go exactly where he wants to and so tries to lift the walker and shift it himself, which works okay some of the time but more often than not results in him overbalancing.  The great thing about the walker is that it has these little reverse brakes on the wheels so the wheels actually cannot roll backwards at all which means when Sam does lose his balance he simply grabs onto the walker and steadies himself quite well.  I was considering taking the walker with to our physio session this morning, just to show Heidi and have her confirm that the height and everything else was as it should be. However, we ran out of time (largely due to Sam's new morning ritual - more about that later) so I decided having to first negotiate fitting the walker into the car would just make us even more late. From next week though I will make sure we have enough time to pack the walker in as when walking with the physio's trolley, Sam lost his balance, immediately grabbed the trolley to regain it and instead landed up toppling backwards as well as pulling the trolley over his little feet in the process. 
Overall, having the walker is such a blessing. It is going to be so beneficial to Sam.  I really can't believe I had developed such a mental aversion to it. And it's an extra blessing that, Sam being Sam, he has become so comfortable with it so quickly, as opposed to shoving it into one of his sensory no-no's along with sitting, holding his own bottle, lying on the floor, hairdryers, vacuums, balloons, etc. . I will most definitely take another video ASAP...just perhaps a little shorter...and post it :)
Sam and Meg had another riding session on Saturday morning. This time Sam rode with Elbie. Oh, he is LUVIN' all the attention from the girls, little charmer. And the colour-coded hats was purely coincidental by the way.  The weather played along beautifully, pleasantly warm with loads of clouds to avoid having to stress about sun exposure.  Yet again, Sam adored his time at Haven of Hope. And, an unexpected advantage, having to run alongside the horses to keep up is providing mom and dad with some much needed exercise. 
Yet another love affair developing...while Aunty Cheryl kept checking in to make sure her baby was doing okay. What an amazing group of ladies at Haven of Hope. Love you guys xxx
Meg feeling a lot more comfortable on Knight and even managed a little independent riding towards the end of the morning.
So, Sam's new morning ritual?  As you all know by now, Sam's still-not-resolved sleeping issues usually result in me putting him in our bed (Ja Ja! Co-sleeping is bad) to a)avoid him shattering the bones in his hands and arms with the sheer force by which he slams them into the side of his cot and b) in a feeble attempt to try and get something remotely resembling sleep myself. Which means that every morning Sam wakes up in our bed and insists on being delicately transitioned into the new day with some cuddles and then some i-padding before having to get up and face the big bad world.  And, even more entertaining is that he's taking to i-padding with his toes.  Because being somewhat "different" is not enough...he HAS to go the whole hog. 

Back to *BLESSINGS* (Okay. So the "flow" of my posts needs a little work lately. Hehe)

Both Sam's physiotherapy costs for the entire year and the cost of the walker have been gifted to Samuel by members of our families.  As you can imagine both these costs are substantial.  There are no words which can adequately express our gratitude and appreciation  (you know who you are xxx). The best we can offer is a heartfelt and emotional THANK YOU at lifting such a heavy burden from our shoulders. Does the Lord not work in truly wonderful ways? xxx


  1. Ah Nicky! That is so awesome! I'm SO happy he's taken so well to the walker!

  2. Ah Nicky! Its so AWESOME Sammy took to his walker so easily and quickly! He's such a great little chap!