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)

Thursday, August 25, 2011


Sam had his two week post-op appointment yesterday afternoon. We sat in the waiting room for almost three times the length of time our actual consultation took. Fear not though...the consultation took less than ten minutes so the thirty minutes spent waiting was nowhere near catastrophic (we've endured almost twice as long sometimes), however it was the rather hostile ambience in the waiting room that made it slightly unpleasant. We were met with a rather dismissive nod of the head and a barely audible something-resembling-a-greeting/acknowledgement of presence. (Just a quick ponder - when one decides to take on a position as a medical practitioner's receptionist, you do surely take into account that said position will entail considerable interaction with people, right?).

With an already anxious knot in my stomach over Sam's questionable behaviour, especially in public, I was relieved to find the waiting room empty. However, literally before I had a chance to sit down an additional six people came in - a mom with three kiddies in tow and another mom with just the one little boy. The kids all promptly grabbed themselves a book from the bookcase and settled down, with the exception of one little girl who after throwing a rather entertaining tantrum when mom refused to surrender her mag in order to read her little girl a story, came and sat down next to us in a bit of a sulk. By this time I had already read through the only two books I had managed to grab out of the car on the way in, but which books Sam was already throwing down on the floor from frustration and boredom. Sam started squirming and throwing himself back and I prepared myself for the almost inevitable smack in the face. In an effort to distract him, I grabbed my cellphone and quickly started the video of Meg singing "Wheels on the Bus" to Sam. Just as I did this, an elderly lady came out of the consultation room and, as we sat right up against the reception's desk, came and stood right next to us. She glanced at me, holding my phone in front of the little girl next to me, also "bookless" (obviously presuming that she belonged to me as her mom sat across the room with her siblings) and then at the other children who were all sitting reading quietly. She looked back at me and with a smug-type chuckle said "I never thought I'd see the day when you could entertain a child with a cellphone" and then to the little girl next to me "There's lots of books on the shelf for you to read" whereafter she shared a brief roll of the eyes with the mom of the one little boy, before leaving. (The mom of three kept her eyes glued to the Kate & Will article she was apparently completely engrossed in). (Just a quick ponder - at what point does any individual feel that they are *that* perfect a human being and just *that* perceptive that they should have no qualms about commenting on complete strangers' children...whether it be regarding behaviour, appearance, development, etc?).  Here's building the bridge and moving on to the actual consultation which was relatively unremarkable.

Unremarkable is anything but what my own ENT appointment was this morning. It turns out that there's fairly good reason for the constant throbbing and general stuffiness of my left nasal passage...that reason being that our "Rocky Balboa wannabe" has managed to cause some serious internal swelling to my nose, as well as appearing to have dislodged my newly-septoplastied cartilage. How awesome is that? I know Sam and I are close and all but did he really feel it necessary for us both to have repetitive surgeries! Hopefully though the current swelling will go down enough for us to find at my next follow-up that things aren't as gloomy as they seemed today, possibly avoiding a retake.

Over the past couple of days I have read several posts/FB chats about a number of RTS sweeties who have taken a liking to hair pulling and/or biting and the general feel seems to be that a frustration at not being able to communicate properly is largely responsible.  Apart from the discussions reminding us that many RTS families are going/have gone through similar challenges, it also got us thinking about whether lack of communication could be contributing to Sam's behaviour as well. So we are seriously contemplating buying Sam an iPad. Yes, we know that he might appear to be too young to use it, but let us take into account that he not only knows that the remote control manipulates the PVR, but can also stop and start video's on my cellphone. We are not completely decided yet, especially as an iPad is a fairly pricey little device (well for us at least) but if there's even the slightest chance that it might aid Sam's communication I think it most certainly deserves a really good think.

(Just a quick ponder - if our friendly waiting-room-consultant was so horribly taken aback at Sam's operating my cellphone, imagine her utter disapproval had it been an iPad.

1 comment:

  1. People who don't have special needs kids/adults in their lives have NO just tell yourself that, the next time someone judges how you care for your child..."She has 'NO IDEA' how condescending her comments and eye rolls are." Or you can just laugh in her face...sometimes that works too. ;)