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)

Monday, December 21, 2015

Tis the season to be jolly and thankful...

...or so they say.
A mere season within which to be jolly? Maybe. A mere season within which to be thankful?
Sam deals with a few more challenges than the average kid, so you'd expect me to be super aware of becoming complacent about the things he does not struggle with...breathing, sight, hearing, oral feeding, reasonable mobility (albeit it knee-walking)...but yet every couple of days the universe throws a reminder at me about the countless difficulties we do not have to deal with and, more importantly, a reminder to be unceasingly thankful for, what is to many, countless blessings.
Becoming a part of the Daniel and Friends Fund was already a mind-altering revelation for me into how much more of a formidable journey many families are facing and quickly put into perspective our own challenges. But oh, the Universe was not yet done with me. Getting to know and love these families whose children battle conditions like Spinal Muscular Atrophy, Congenital Heart Disease, Spastic Quadriplegia and chronic, heartbreaking Epilepsy, where having 20 seizures a day before the clock has barely struck 10am is the norm, was not yet enough insight. No, the Universe concluded, you need to see more.
And so our paths led us to the Sive Nathi Licensed Home in Blackheath, a home which provides fulltime care to 40 children who suffer with severe disabilities (mostly Cerebral Palsy). Not only do these children face profound challenges each and every day, but they do so without the comfort and nurturing of being part of a conventional family. Mostly abandoned (due to the inability or unwillingness of their families to take care of them) the children at Sive Nathi Home know only the facility's carers as the consistent adults in their lives.
Of course I knew facilities like Sive Nathi existed, but to go in and see the little faces...touch a fragile little into a heartbreaking pair of eyes, was just something else completely. Yet still, despite circumstances most of us could never even imagine, there were plenty of smiles and heartwarming clips of laughter.
Don't take things for granted...there's always someone worse off than never know what kind of battle someone else is fighting - all sentiments expressed regularly, often too lightly.  It's fairly easy to entertain these thoughts "from a distance" but not that easy to comprehend completely until you've had the opportunity to witness these struggles up close and personal. And, yes, I say "opportunity" because that's exactly what it invaluable experience for those who occasionally find themselves wishing their lives were on a different path, to be able to surrender to some necessary self-reflection in order to appreciate that that "different path" might be one far more challenging.

Our visit to Sive Nathi is shared in more detail with quite a few beautiful photos at Daniel and Friends Fund BlogSpot, but one of my absolute favourites....

Five year old Mosa...a charming young man who
absolutely delighted in the attention and had his
enchanting little smile on the ready the moment he
spotted the camera.

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