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)

Monday, November 1, 2010

Locked in my Heart

Over the past almost-eighteen months there have been so very many people who have left an everlasting footprint on our journey's path...some are family members, some are old friends, some are new friends, some are medical staff who have gone over and beyond what their "job" simply requires them to do to show that they truly care about Sam. All these people are so important to us - I have blogged about this before :) Besides the obvious blessing of having these people in our lives, is that we are able to tell them how special they are to us.

And then there are some who have unknowingly touched my heart :- About two weeks ago while whirlwinding through the shops, as has become the norm to accommodate Sam, I noticed a mom and a gran with what looked like about a seven-year old beautiful little girl with long brown hair tied in two pretty little bows, white leggings, a dark-pink top and super-rosy cheeks. Mom was looking slightly tense while she made an attempt to get her daughter to try on a pair of white shoes but nothing seemed out of the "norm" other than that the little girl seemed to have quite a generous helping of energy. A few minutes on while heading towards the till to pay, mom and daugther came whizzing past us helter-skelter through the aisles while in the midst of a terrible struggle to win control over the trolley which Jenna (the little girl) was trying excitedly to maneuver away from mom, completely caught up in her own little world totally oblivious to the commotion she was causing. I know her name was "Jenna" because as the couple flew past us, amongst appalled stares from other shoppers, I caught a glimpse of the desperately embarrassed look in mom's eyes while she cried in frustration "Jenna, I am going to smack you!" As we recovered from the near head-on collision that would have involved Chris and one Woollies trolley I turned around and noticed that the little girl was wearing a diaper and all of a sudden felt like I really had been hit by a trolley...or a lorry for that matter! And instantly my heart went out to mom and Jenna and I wanted to turn around and find them and tell mom it was all okay - not all the shoppers were rambling around wondering what kind of a mother she was for allowing her child to be so uncontrollable or mentally reaffirming what course of disciplinary action they would have bestowed upon poor Jenna...I wanted to tell her that we understood, but she was gone. Meg and I walked up and done the aisles while Chris stood in the queue but they had instantly disappeared.

Friday's story is a little more joyful...again, after zooting through the shop on Friday afternoon for wrapping paper for Mattie's and Payton's birthday pressies, we were walking up and down trying to assess which queue was the shortest. After Meg and I had finally resigned ourselves to the fact that the queue Chris was already in was indeed the shortest at that time, we had to "excuse me please" through the other shoppers which had since joined Chris' queue. After my last "excuse me please" to the couple directly behind Chris I went to stand in front of them with Sam on my arm. The woman's face instantly lit up in delight as she started laughing out loud then, after shoving her handbag into her husband's hands, snatched Sam from me while exclaiming to her hubby how cute Sam is, told him to look at Sam's hair, at how Sam was laughing at her....and so on and so on. Anyway, this went on literally the whole time until it was our time to pay, amidst amused shoppers and just before we turned to leave she asked how old Samuel was (yes - she already knew his name by then) and when I told her & after she commented about how tiny he is, I explained very briefly about RTS and she told us how that just made him even more special than he already is and then she told us that she has Turner's Syndrome and that she cannot have children. She gave both Sam and I a hug goodbye and as we turned to leave, exclaimed loudly to Sam that she loves him.  Once in the car getting ready to leave the parking lot I told an unconvinced Chris that we should go find them (amongst the three hundred odd cars parked there) and give them our contact details "just for sommer" (a South African term meaning "just because") but finally sanity prevailed (Hey, there's a first time for everything!) Still, deep down I wish I HAD stalked them down like a looney because the nine or ten minutes which that beautiful, amazing young woman spent in our lives has left an incredible impression and I really wanted her to know that. But now, all I can do is pray that, with the help of our awesome God, that she will one day become a mom.

There have been others, many others, whose compassion and empathy you can truly "feel" even with the briefest of meetings, as they will tell you how wonderful Sam is and wish us strength and grace. So while I know we've still to really do our "time" with people who will be more judgemental than understanding, I also know that in this particular part of the world, in this particular time there are so so many wonderful, caring people just wandering around waiting to make your day :-)


  1. Once again your great sense of humour is so infectious. A really awesome story and yes the world is so full of incredible people and somehow they just seem to find you in the most strange places. You had just encountered one of the Angels that roam around working their magic when we most need it. Sam is of course so irresistible and friendly and through him you will still meet many many such angels, just as I have done.

  2. beautiful! i agree that we should acknowledge other special kids as people, especially during difficult episodes...we all need the encouragement!