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)

Tuesday, October 21, 2014

Bubble Boy

Silence is golden they say...sometimes it's just silence...bursting at the seams with so many thoughts and worries and confusion, which putting words to seems to rather, silence :)

Silence, however, can also simply be the result of being totally preoccupied with concocting up the most creative and convincing defense arguments for the countless assault, vandalism and similar charges you are inevitably going to be delivering on behalf of your 5 year old son!!

Sam has never been crazy about people coming into his space, but as he gets older his space seems to be growing at an alarming rate (currently about a 5m radius 'bubble') and now applies to things as well as people.

If making like an ostrich and burying my head in the ground when being overwhelmed with embarrassment and awkwardness was an actual possibility, my side of the Earth would strongly resemble a giant golf ball! Whether it's the kindly old gentleman turning around in his seat at Meghan's school function to coochie-coo Sam, the lady who suddenly appeared out of nowhere to squeeze passed our snugly positioned trolley (in which Sam was a passenger) in an already sensory-abusive supermarket or the young couple who unknowingly pushed their trolley tightly up against Sam's stroller in a crowded lift...each incident was met with the same intense and hostile behaviour from Sam (not even slightly deterred by the pain he must have felt when slapping the trolley in the lift). It's mind boggling for sure how his sensory challenges just continuously change and intensify.

But, as is almost always the case, there is another matter which so overshadows our Bash-full Smurf ;)

And it's also another reason for being a little quiet, fearing that sharing might attract the usual jinxing (you know, like v-wording and being healthy). I'm hoping that 'this' has been going on long enough to be a permanent part of our lives.

For the last 10 days Sam has not only pee'd in the potty every night, but has gone THREE whole days on just one nappy, which nappy comes off dry at bathtime! Yip, I believe our little dude is well on his way to being-potty awesome is that? Of course there's a twist. Would it be Sam if there wasn't? He refuses to sit on the one-and-only big enough potty we searched endlessly for, which is making for some entertaining housekeeping when standing over the potty and not all parts are adequately aligned or little curious hands go a-wandering :D But not for a second does this dim such an awesome step from Sam xxx

Looks like the most chilled, serene little guy ever - ppffftt! LOL!