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, August 26, 2009

Conquests to date....

Sam has faced many challenges in the first twelve weeks of his life...and all of them are things we take for granted. First - he could not breathe on his own and required seven weeks on first an oscillator, then a cpap machine, then nasal cannular and finally normal oxygen. While he was struggling to learn to breathe we kept thinking and praying "Oh...if only he could learn to breathe". Then, Sam conquerored breathing - Yeah! But then Sam could not drink - he was breathing on his own but could not leave the hospital because he could not feed. So after two weeks (and nine weeks in NICU) Sam left the hospital with a feeding tube and we kept thinking and praying "Oh...if only he could learn to drink". Then, Sam conquerored drinking - Yeah! But, Sam was diagnosed with sever reflux and so was put on meds and an anti-reflux formula which made him severely constipated, so much so that he could not have a bowel movement without a suppository. And it was awful - it affected his drinking, after two days without a bowel movement he would cry bitterley with discomfort and we kept thinking and praying "Oh...if only he could poo" LOL And then, Sam conquerored pooing - Double Yeah!!! And then, we were told to expect delays with Sam's milestones because of a) his being so prem and b)the RTS. So when Sam smiled, really really smiled, it was Triple Yeah!!

Oh how we have learnt to appreciate each and every conquest and to be truly thankful....every time Sam finishes a bottle, every time he has a dirty nappy (yes, even when it's at 4am), every time he smiles is just as precious and glorious as the first time!

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