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, September 2, 2011

Bit of an unfair trade :(

We have had to trade our much anticipated three day's of hot pool swimming, relaxing and just having a much-needed break next week for a visit with Sam's paed at 12:00 today instead, thanks to increased coughing, gagging, a blocked nose and now a temp as well. 

Is there a more descriptive, expressive word for *FRUSTRATED*?

If there is.....that's how I'm feeling!

Oh Happy Days! (Wish I could get that song out of my head...especially as those are the only three words I know! I just might have finally lost "it", folks). Oh Happy Days!


  1. Yep, lots of words come to mind, but none are polite enough to print! Hugs to you. Think about how far Sam has come in his life (and with his health) and know that he will continue to improve. It will get easier!

  2. We had a similar experiance with our daughter. She was born with vacter sindrome. But to God be the glory. He has been faithful every step of the way. He is everything. I it hasn't been easy, but we know God in a personal and new way