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, March 23, 2012

Fievel goes South..... the ENT at 1:30pm :( I was really REALLY hoping that somehow Sam's tonsils would recover enough to be able to delay removing them but I happened to spot them yesterday ("spot" meaning that I lie in wait for ages waiting for an opportunity to stick my little light down Sam's throat - having a little smurf who cries so passionately, thereby opening his throat beautifully, is not all bad all of the time) but they don't look much different to how they did before the Orelox course. Still, I thought perhaps I'd give it till Monday before making the appointment with the ENT, just in case Sam's system was having a delayed reaction to the antibiotic which might suddenly clear up all nasties over the weekend. Disillusioned much?

Sam did not have a good night though, lots of chokey-apnoea's and a little bit of fluid draining out of his ear so trying to put the whole tonsillectomy thing off any longer just seems senseless. That's unless Dr V is suddenly struck by an awesome revelation concerning a Plan B. It could happen, right? The only consolation, or so I thought, of doing the tonsillectomy sooner than later was that I was hoping to bring in a dentist who could have a look at Sam's teeth while he was under anaesthetic, because there is absolutely zero chance that he would tolerate a normal dentist's consultation. Over the past couple of months, Sam's teeth seem to have suddenly weakened and the one front tooth is almost chipped right down to the root, just from him chewing on his plastic toys, etc. I've been told that its more than likely due to the acid reflux which is slowly eroding his teeth, so I've been quite desperate to find out what we can do to avoid further deterioration. But as Murph would have it, there is not a single dentist at Vincent Pallotti! Very frustrating. So now we'll have to wait until Sam's foot surgery takes place in Aug/September as it's been done at a different hospital which, thankfully, has a dentist or two practising there.

Pushing illness aside for a minute (if only!) Smurf is sporting a new haircut. Nothing fancy, the usual close cut. It would be really great to see Sam with a super cool little boy's style, but for now we have to opt for what takes the least amount of time and attracts the least amount of vomit!

Sam loves using dad's beard as a scratching board - nothing like a little smurf who does his own sensory brushing!

Sam and Fievel - possibly separated at birth???

Since the beginning of OT, Sam's therapists have tried, always unsuccessfully, to get Sam to crawl through little play tunnels or even just to go inside a little play tent but Sam just freaks out every time and usually retreats into defense mode. Yesterday morning at speech therapy, Tanya had as usual set up different play areas in the room, one of which was this little tent. While busy on another activity, before even attempting the tent, Sam suddenly crawled over and without a second's hesitation crawled inside to play. He stayed there for a while, crawled out and then crawled back in was really quite amusing.

How much you want to wager that I'll go bragging at OT next week and then Sam will point-blank refuse to do it there?

So the school holiday has officially begun...barely a half hour ago - it would be amazing if it wasn't almost entirely spent filled with illness and doctors' rooms and the likes, but I know we are not alone, even if it does turn out that way. Many of Sam's RTS siblings, some of them thousands of kilometres away, are battling with illness at the moment. In a warped kind of way, it's almost reassuring - just a few days ago I was quite determined that we needed to sell our house and move into a small little flat or townhouse somewhere, free of animals and gardens and with the absolute bare minimum furniture, appliances, etc to ensure as little chance as possible of Sam being exposed to allergens or germs or anything really. It's almost impossible not to wonder whether you're contributing, albeit unknowingly, to the problem...but with there being no guarantee that it would remedy Sam's immune issues at the moment, it does seem a little drastic....for now at least. Can't promise there won't be a For Sale sign on our front lawn next time a new ailment does the rounds!

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