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, August 29, 2014

Riddle me this....

Riddle me this
Riddle me that.
Some days are peaked,
Some days are flat.

Riddle me here
Riddle me there,
Senses unclear
Best beware!

This little dude's senses. A riddle, mystery and puzzle all on their own. Exhausting.

Over the past few weeks we're very very much back to throwing up all over the show again, not in the least bit reserved for unfamiliar places but seemingly more like at any place that's not home. We were visiting a friend recently who has an old-fashioned till in her school room. Sam was already anxious just about the outing in general. Meg was messing around by the till and pressed the little button to print a till slip but there being no paper in it, it simply made a funny sound. You can probably imagine what kind of sound - not particularly sensory disturbing, well not for us anyway but definitely distressing enough for Sam to throw up.

Again we're back to a fearful, plank-like extension when I try and get Sam to walk holding my one hand or using his walker yet a few weeks ago he walked all the way from the car into the physio rooms holding just my one hand??? And here's the doozey...completely fed up with walking around with soaking wet, long hair in the middle of winter thanks to not being able to use a vomit-triggering hairdryer I decided to give my hair the chop about 2 weeks ago. Still getting used to how quickly my hair now dries, after my shower this morning I hurriedly went about getting Sam ready for his physio session and happened to catch my reflection out of the corner of my eye as I rushed about. I looked like I had run headfirst into a Van de Graaff generator!

↑ If it wasn't for the hilarious notion of being able to sit down to have a cup of (warm) tea (Oh yes please) this would have been a pretty accurate picture. 

So there was little else to do but sit Sam down in front of me (for more effective vomit-catching efficiency) and switch the hairdryer on. I first only tried about 10 seconds then stopped, expecting to see that 'I'm about to share some projectile vomiting" face. Nothing. Tried another 10 second round, then longer, and longer. Nothing! I had just started my internal whoop-whoop celebratory dance at having (finally) conquered something sensory related when it hit me. I've chopped off my hair for nothing!  

Luckily, Sam's sensory challenges being the chaotic labyrinth of unpredictability that they are, I will quite likely pop the hairdryer on tomorrow morning only to have him shower us all in some or other partially digested substance. Oh the anticipation! 

So other than those fabulously entertaining sensory issues, there's been nothing particularly interesting to report. We've signed Sam up for the home programme at the Chere Botha School just to have a little guidance as to what next I should be teaching him. Having mastered numbers, shapes, letters and colours some time ago I am not 100% certain where to move onto next. While Sam's physical abilities are obviously compromised, the home programme co-oordinator was very obviously impressed with Sam's intellectual strengths, especially when I showed her how I 'test' Sam by drawing several balloons in black and then write the names of the colours inside (also in black so as not to give Sam any hints) and then set all the colour crayons out next to Sam. He will, without hesitating, correctly read the name of the colour needed and select it from the lot and colour the balloon in. Fair enough his colouring skills need a little attention, but it was a very proud mommy moment for me made even sweeter knowing that it's a skill I taught him myself ♡♡♡

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