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)

Sunday, February 23, 2014

Dunkin' Smurf

Sam has acquired a new bathtime habit...dunking his Tintin-style 'kuif'. The funny thing is that normally he doesn't like water in his face, but when it's dripping off his own fringe it's apparently less troubling. Today was the first time he managed a few smiles and giggles. This whole mom-out-of-action thing is really taking its toll on him and he's even started lashing out at Gramps, often smacking him or trying to pull his almost non-existent locks when Gramps has to take him from me for a nappy change or similar task.

This whole foot injury is one of the most frustrating things I've ever had to deal with for sure. And seeing new bruises and swelling popping up almost every day is really starting to eat away at my little fantasy that after a quick examination on Friday morning,  the orthopaed is going to tell me the foot is okay to start walking on. This is going to be the longest week ever :(

Possibly also adding to Sam's irritability is the fact that despite having polished off his last dose of antibiotic this morning, he was still sporting a low grade fever this afternoon...can only hope that it's not indicative of a more persistent throat infection :(

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