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, July 13, 2011

Daddy Daycare

So what was all the fuss about. ON Monday Morning, Nicky said goodbye, I wanted to take her but we were not sure how Sam would take the goodbye at the hospital.Soooo, Sam slept till 8am, woke up with a smile and spent 10 mins talking to me, uuugh cooo aaaa etc and then it hit me, the bottle is not going to walk into the room by itself.

I put Sam in his cot and made sure the sides were up, and ran to the Kitchen, had a quick look at the thesis on the fridge door left there during the night by the Sam fairy,distant cousin of the tooth fairy. REALISED that I'm running 45mins late with Sam's Day plan,but hey Sam's not complaining. The list did help, Sam had every bottle and meal on his menu. Sam even managed to give me not on but two dirty nappies, and they were more than just wet, they had stuff in it.

Sam was just great, he ate and drank everything that was given to him (as per the list). He played, watched TV and did not cry once. OK he cried once, but it was not my fault, I told him not to ride his bike on top of the dining room table.......

Then Brampa and Mommy happened, when visiting Mom in hospital, I got all the suggestions, Maybe Brampa must sleep on a mattress in the room, just in case I don't wake up. We settled on Brampa sleeping in Luke's room and Luke slept in front of the TV. Bramps got up every 45 mins to check on us, but we were just great. I made use of my Dad SuperPowers and was aware of almost ever move Sam made. Sam made sure of it, I had a hand/head/feet in/on/bumped/slapped/kicked my face/ribs/arm the whole night. knew exactly what Sam was doing and were he was. So much for Nicky thinking that I will not wake up for him.

Day 2..... repeat most of Day 1. added we went to fetch Nicky from the hospital and to her surprise Sam was fine, still not sure why she was worried.

But on a Sad note... Nicky does look very sore or as they say in my world "vrek eina" , so I will have some more time to spend with SAM, bring it on, I had fun spending so much time with my little guy.


  1. Well done to you Chris and Brampa what a sterling job you guys did and hope Nicky does not feel like "well what am I doing here when these guys are so very capable". Hope Nicky is feeling better sure she is not LOOKING better yet.......but its over and once again congratulations to you guys.

  2. Congrats Chris! You survived! We're praying for Nicky's complete recovery.