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)

Friday, April 27, 2012

The Smurfy Swagger...this is how I roll!

With my third birthday just around the corner, I know that Mom and Dad often feel a little sad about me not walking yet.  Gosh, I even feel sad sometimes. I love being able to get around on my own but sometimes I need one or both of my hands while I'm crawling...which is why I've pretty much mastered my version of "walking".  It's definitely not as smurfy as walking on my feet would be but right now that's just way too scary for me. I know that, if I fall, I only have 80cm between my head and the ground...but to me it may as well be 8 metres. And I also know that, if I fall, I might only cry for a few minutes after getting a bump on the head...but to me the pain feels more like a blow from a I'll probably cry a little longer (and perhaps even share a little regurgitated Pedisure). Even though there's lots of space between the different pieces of furniture in our home, to me if feels like I'm trying to out maneuver closing-in tables and chairs, which tables and chairs appear as huge as towering skyscrapers instead of being barely taller than my own head.

I definitely feel safer on my knees for now...and I heard Mom checking with Heidi if it was okay for me to move around like this and Heidi said it was really quite alright...that even though I am only on my knees, I still need to balance and there's still some rotation and shoulder-hip-dislocating happening...or was that dissociation...definitely something with a "dis"! And it does make for easier carrying of items which need to be thrown on the kitchen floor for noisemaking purposes...and much better aiming too.

Check me out :

I can even walk and read...

...not even my warm, fleecey dinosaur gown stops me.

Taking my wooden pig for a walk ("pig" is one of the latest signs I've learnt)

Taking Barney for a walk too :)

There isn't a picture of it yet but if I'm really excited about getting somewhere or to someone quickly, I can even run xxx

1 comment:

  1. I've haven't been checking blogs for a's so wonderful to see how much you've grown, Sam! And I LOVE your Smurfy go where you need to go!