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)

Saturday, November 30, 2013

Change the plan but never the goal

Cannot believe it's the last day of November. And I've only blogged once this whole month, so had to attempt at least one more post, albeit short.  This time of the year is notoriusly "crazy" as the school year comes to an end and brings with it all kinds of activities like concerts and prizegivings, etc amongst having to study and write exams, Meghan that is.  We've only three school days left for 2013 and I can safely say that the entire household, Sam included, is looking forward to a little "chill" time.  
Sam's behaviour is all over the place...we have surprisingly harmonius days, like Friday, when the little dude was the most charming smurf around.  All smiles and co-operation during his physio session and sweet and friendly during a shopping trip immediately after physio, which is normally taboo with a capital YIKES! Followed by a day of up-and-downing in the car getting Meg to her different commitments.  Today he has been completely unruly, throwing anything and everything he can get his hands on, causing mutiny during Meg's ballet prizegiving and just generally being grouchy.  I am hoping that once our routine settles down again we'll see a little balance restored.  Even when life is a little more peaceful Sam tends to act up on weekends when, inevitably, his daily routine is disrupted. 
We have had quite significant improvement with Sam's walking.  I ditched the towelling wedgey I'd fashioned on Sam's walker as, although it was providing the security he needed when using the walker, it definitely made his walking a little awkward.  So, with Plan A proving unsuccessful, I fashioned Plan old, stretchy belt attached to the walker which provides just enough security around Sam's trunk without hindering his movement. And, even more exciting, is that Sam has started pulling himself up on things again.
Success! Now Sam's more than happy to spend more time in his walker  #phew   

Heck yeah!
With Sam's testing all kinds of boundaries over the last few weeks I decided it was time to bring in some serious reinforcement when disciplining him and introduced a naughty chair. His first few sits were really quite traumatic for Sam, with his having sensory challenges with transitioning to and from a sitting position, but by the second day his being placed on the naughty chair was an opportunity for him to discover just how quickly he could "cute" himself out of punishment.   

On Thursday Sam had his very first haircut at an actual hairdresser.  The hair salon I had made the appointment with is super cute, decorated in true kiddies style with individual tv's and dvd players at each cutting station.  As soon as we walked in though Sam started gagging purely from having to encounter a completely unfamiliar environment. Of course getting him to sit on the chair was not an option but the stylist cutting his hair was refreshingly patient with him and pulled up a seat we could both sit on, which is where she eventually succeeded in taking a few worthwhile snips. 
The result (try as I might, I could not get this pic to rotate )... 
There's been not a single other "Mamma" uttered at all :(  But we persevere with getting Sam to repeat our very many requests to do so....or any other words for that matter.  But oh my gosh, the kid's signing vocabulary grows by the day as he astounds us often with signs he has learnt himself from watching Mr Tumble or his iPad.  His developed a bit of a defensiveness to water again, which is quite disappointing as Sam's evening bathtime has always been one of our favourite daily activities. Now, within minutes, he's throwing his bath toys on the floor and splashing around in frustration like a looney. I'm hoping this too will settle down soon, as I would often hang over the side of the tub, my face bare inches away from Sam's, and prompt some of our most intense speech therapy sessions.
So, with Christmas being just 25 days away, I guess it's time Smurfville considers putting up some Christmas decorations and an actual tree. I have to admit I am ever so slightly apprehensive about the entertainment value said tree and decorations are going to provide for this space!

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