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)

Tuesday, November 23, 2010

I'll huff....and I'll puff.....

and I'll blow your house down...and all the trees and fences and billboards and thirty-story buildings and maybe even a mountain or two, said the GIANT wolf to the little town. YIKES! So, in case you're wondering what nonsense I am talking now....we're experiencing a slight little breeze here in Cape Town (and they call Port Elizabeth the "Windy City"???!!!) So it made our appointment at Red Cross Childrens Hospital ( Take a peak) this morning just that much more entertaining. Firstly, I was last there about nine years ago (when we had a cancer scare with Meghan - a story for another day) and Chris has never been there so we were slightly clueless as to where was the best place to park in order to avoid been blown off our feet on the way into the hospital...not that there was loads of parking, well that we knew of anyway. So found a parking space, headed towards the building basically following everyone else into this one entrance and, just to make sure we were going the right way, still stopped and asked one staff member where the "Main Entrance" is. He confirmed we were following correctly so we headed through those doors. Once inside the security guard informed us we must go round to the "Main Entrance" (Huh?). Out into the slight breeze again and in at "Main Entrance". Go to Reception who advises us we actually need to go through the OTHER "Main Entrance"! Seriously? Hee Hee! It was actually quite funny, gave Chris and I something to laugh about to take the edge off our nerves. On the way out we shared the lift with ten Grade Two's (or around that age). Chris, being Chris, tried to scare them a little by saying something along the lines of there are loads of doctors walking around with huge big needles. They all looked at him rather google-eyed, while I slapped him on his arm for trying to make them nervous even though he himself is rather scared of needles. (Sorry Love - too much info?) Anyway, their teacher told us that the one little boy is having heart surgery within the next two weeks so they are all pretty used to needles by now.

So, that was our trip to Red Cross this morning. Feels like I am leaving something out....oh yes, Sam's actual appointment. Knew there was an actual point to this post - for a change. So, after another thorough examination and reviewing again the pro's and con's of the surgery, Sam will, in all probability, be going in the week of December 6th, theatre availability permitting. And? And...both Chris and I are confident in Prof F's expertise and judgement and feel 100% certain that this truly is in Sam's best interest. So yes, we will be nervous about the operation and saddened at the thought of Sam experiencing more pain and trauma during the recovery period, but our hearts are at ease that there is no other way and we are not subjecting him to this procedure unnecessarily.

That's about all the news I have for now, other than that it is mine and Chris' anniversary tomorrow! Last year we antagonised about whether we should take a chance and go have an exceptionally quick dinner somewhere while Brampa babysits - quick as in decide on the restaurant beforehand, call in our order before we leave home and ask them to literally have it waiting on the table by the time we arrive together with the bill, once there gulp down alternating mouthfuls of food and wine and while swallowing the last mouthful leave restaurant with break-neck speed to return home! It all sounded so exhausting though that we just gave the idea a miss and had a take-away at home. Sooo, for the last couple of weeks we have been re-visiting this idea again of our FIRST evening (or morning or afternoon for that matter) out without Sam, since his birth. We have discussed the logistics at length but deep down I know that as evening approaches tomorrow we will both cave and opt instead to stay at home. Watch this space.....


  1. Happy Anniversary! Ours is tomorrow as well!

  2. Happy Anniversary to you and Chris...take the plunge Brampa is very capable and it will make you feel a lot better having had a gap for awhile.