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, August 27, 2010

It's been a while....

....since Sam treated himself to one of the awesome treatment packages offered at the Netcare Hospital Spa and so after entertaining his 39.1 fever for a good twenty-four hours, we decided to try out a new "two-for-one" deal which consists of a pretty ferocious flu bug and, last but certainly not least, a kidney infection.

Yip, almost four months to the day Sam is back in hospital being prodded, monitored and, his least favourite, being stuck (literally) with a drip - which is already being done for the second time today as the first attempt left him with a bloody foot and Chris with a bloody sweater and pants barely ten minutes after arriving to relieve me. Interestingly (or rather, worringly) the previous stay in hospital was also four months before THAT one. Let's just hope and pray that there's no pattern forming here. Sam is scheduled for a sonar scan within the next half hour to see what's going on with those little kidneys which might be making him sick.

So we have a really sick little Smurf on our hands at the moment who still, as always, remains full of smiles and chatter for the nurses and, unless he's in pain, pretty darn joyful - which is why we all, especially Megs, miss him so much and hate to see him going through this all soon. Needless to say, it looks like next week's MRI is again going to have to be rescheduled.

Now let me rush off to make the most of my "hygiene" break, in the best interest of all the other patients moms and medical staff:-)


  1. Oh dear Nicky. I am so sad to hear that little Smurf is so unwell. Praying for him to recover QUICKLY! Shout if there is anything we can do... HUGS

  2. Hugs and prayers for a quick recover. I'm so glad he's happy through it all.

  3. Thinking of you! Hope you are all home fast!

  4. Doubling up on the prayer chain and thinking of you and how exhausted you must be. Be strong we are all behind you and praying very hard that Sam bounces how cheerful he always is throughout all these awful illnesses.....he is such a little conqueror....lots of love to all