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)

Wednesday, September 16, 2015

From Smurf to Ninja King

There are a number of things that can be said about parenting a child with special needs, but one thing which would most certainly not be included amongst them is that life is boring. In any way. Ever.
Sam has taken it upon himself to ensure that every man, woman and child within the greater Cape Town area is equipped to defend themselves should they unexpectedly be the victim of a sudden act of violence. To this end, he passionately dishes out blows of varied strength to random people as he sees fit...whether you be his sister, physiotherapist, friend, fellow-customer in the local fish shop or (calm my bleeding heart) a local celebrity who your mom and her fellow charity directors are trying to secure as the "face" and ambassador of said charity. #shame#cringe 
In other words...the kid smacks. Everyone. All the time. Sometimes because he's agitated, sometimes because he's tired, sometimes because we're not understanding what he's trying to communicate, sometimes because you're too close to him (whether your fault or not)...sometimes to initiate a reaction and sometimes just for the blatant fun of it. Yes, really!
Of those, the most traumatic episode for sure was the customer in the fish shop. It was Friday night at an already busy supermarket and just before supper time too. Battling lately to physically cope with Sam's 20+kg's on my hip, I set him on the floor to walk around a bit (assisted walking of course) as we waited for our order. Before I had even had the chance to "settle" Sam on his feet, a lady brushed passed him and instantly, in a flash which would put any ninja's reaction time to shame, Sam reached out and smacked her on her leg. In an equally impressive turnaround time, Sam's hand was grabbed and held while the recipient of his latest self-defence drive bent down and said harshly into his face "Moenie dit doen nie!"(Don't do that).
I took Sam's hand away from her and while trying to put some distance between the two of them, began apologising and trying to explain, only getting as far as "I'm so sorry, his Autism..." but before I got the chance to finish my "...makes him anxious in busy environments, particularly when too close to others" I had a "Moenie dit doen nie! delivered up close and personal in my own face. Um...HUH? She proceeded to explain to me how my child is a gift from God and how her third cousin's, step-sister's neighbour from seventeen years ago also has a child with Autism. When her impromptu tutorial on Autism began broaching on the subject of educational options for children with Autism, I decided to take my leave and exit the shop, amidst several stares of unknown nature...I was not about to look around and take account of who was with this lady on my apparent lack of knowledge and guidance on all things Autistic, not having that third cousin's, step-sister's neighbour from seventeen years ago as a valuable source of reference and all.
Thank heavens I did not mention Rubinstein-Taybi Syndrome and/or Cerebral Palsy! But, hey, way to completely divert your social blooper lady!
In the lil dude's somewhat-flimsy defence though, at that stage Sam was averaging about one-and-half hour's sleep each night...I reckon I might be pretty smack-happy too then if I had had less sleep in the last week than what most folks had managed in one night. Thankfully, our Prof Prof seems to have nipped those sleepless nights in the butt for us! After three consecutive consultations wherein he expressed concern that Sam was possibly experiencing seizure activity throughout the night, disrupting his ability to reach deep sleep, I decided to trust the knowledge and expertise behind his several degrees and give the suggested Epilum a go, taking comfort in the fact that should it not be seizure-related (or some other funky brain issue going on) and there is no improvement, we can simply stop the Epilum without any detrimental consequences.  With the well-known jinx which historically flips anything sleep-related I mention on this blog, I choose instead to share with inconceivable joy and relief that we are currently loving Epilum!!!
Truly a sight for sore eyes!
Over the years Sam has had many interesting objects be the focus of his attachment-obsession issues. From spoons to blankets, dolls and (his all-time favourite and often revisited) books. The AOO of the moment is....wait for it....empty dvd covers. The best part about this particular fascination is that he tries to gather as many of the covers as possible and has a meltdown of note should he lose his grip.  As I said...anything but boring!
Falling asleep with them is a gem of a situation to experience.
The second Sam feels just one dvd cover slipping, he wakes up to
retrieve and re-secure his grip on his "stash". Oh...did I mention we
now do naps in the car? (Taking into consideration four hour long
trips to Stilbaai seldom consisted of any shut-eye!) Actually, we now
regularly do naps in the afternoon...almost EVERY afternoon. Yip!
Another new favourite pastime for Sam is stopping at
the local pond to feed the ducks. As adorable as what
this is, there are one or two minor issues :
A) We drive passed this particular pond anything
between 2-6 times a day, with Sam requesting
to stop and feed the ducks each time.
B)There is only a certain amount of bread one
can keep in store at any given time.
Neither of these are issues Sam seems to see as particularly relevant.
And just for fun xxx 

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