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, January 1, 2013

Desperately Seeking my Mojo

Smurfy wishes for an awesome 2013 everyone :)

I seem to have misplaced my blogging mojo a few weeks ago. It's quite possible it got washed out with the litres-upon-litres of vomit (bleghhh) we were shovelling four to five times a day towards mid-December, when Sam struggled through possibly one of his most health-challenged periods. After 9 days of unbreakable fever, no eating, loads of slime, coughing, croup and of course the relentless v-wording it felt like we'd never see a healthy Sam again. 

Needless to say, this trial too passed and Sam was healthy enough for us to go spend a few days in Stilbaai with family. 

While Sam was sick, the only activity which seemed to keep him calm and comfortable was "going ta-ta" so at least once a day, after he'd gesture towards the garage waving his little hand eagerly, we'd take Sam for a no-destination drive.  Thankfully the "ta-ta bug" was still biting on the way to Stilbaai so Sam had no trouble enduring the lengthy 4 hour drive. 

Sam's been prone to lovely 2hr-long afternoon naps lately and with Dad being on holiday too, he eagerly took advantage

Meg and Chrisna waiting for the 2hr-long nap to end so that they don't have to be on noise restrictions any longer

Sam loving the 3-way chair enjoyed by his uncles and cousins over the last 35 years (Yes, really). Sam's Buzz Lightyear car had to of course be brought with, along with several other toys and favourite dvd's, to keep Sam's environment as familiar as possible.

On Friday afternoon we drove out to Sam's cousins, Cayla and Dewald, in George.

Sam was keen to join them in the pool but settled instead for some sideline flapping which left him just as wet anyway

Both Dewald and Cayla insisted on giving Sam one of each of their toys.  From Dewald Sam got this really awesome light making, noise emitting, vibration yielding object. 

And from Cayla, one of her babies :) to keep Sam company along the 2hr drive back to Stilbaai, along which Sam finally lost his "ta-ta bug"

For the first time in a long time, Sam had a really good night's sleep on Friday night.

Which meant we could hit the beach before 8am already to avoid both the extensive crowds and sweltering heat

All beached out and ready for breakfast in his Smurfy towel

Sam slept really well on Saturday and Sunday evenings, waking just before 10am yesterday morning. He was so keen to see the New Year in though that he was awake from just after 12am till just before 5am this morning...but is making up for it by still laying fast asleep right now.

Enjoy your New Year's celebrations's hoping I stumble across that darn blogging mojo soon xxx

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