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)

Thursday, February 20, 2014

Nocturnal Smurf

Crocodile Samdee :)

Nocturnal Smurf was my original heading for this post after Sam pulled another all-nighter amidst several evenings of his usual sleep-challenged nights. Sam's only second ever art class was to be held at our house on Friday. It seemed like a good idea at the time but when Friday morning dawned and Sam had very few hours of sleep to brag about I started feeling a little anxious about Sam's ability to peacefully allow his friends to explore his territory. While Sam did not really participate in the art activities himself, he was unexpectedly okay with having the group in our small house and actually enjoyed quite a few delightful moments watching the others playing and putting on a show for him. Yes, there were one or two narrowly-escaped hair pulling and toy throwing incidents but at the end of the class I felt
the art class had been a successfully interacted experience for Sam, minus the actual art of course. 

Sam was fairly exhausted by evening and fell asleep quickly... and awoke just as quickly somewhere before midnight, not shutting his eyes again till 8:36am on Saturday morning for a two hour nap. 
There was bodybashing, crying, frustration, desperation... but no sleep. Oh... and there was fever... and vomit. Saturday and Sunday both flew passed in a haze of exhaustion and more of the above while trying to attend to necessary tasks, like laundry, in the 40ºc heat. Somewhere round 6pm on Sunday I remembered I'd done a load of washing and forgotten it. With the heat still stifling at that time I chose to quickly hang it out and it was in my haste that I trod incorrectly on an uneven piece of ground and popped my ankle. 

Off we rushed to the local trauma unit where after 4 hours of waiting and 6 x-rays the on call doctor determined it was just a bad sprain and after applying a bandage, sent me on my way with instruction to keep off the foot for a week. I was a little uncertain of her diagnosis but anxious to get home to my sick little man. 

With Sam being really miserable and clingy it was a little difficult to keep my leg elevated and while I didn't stand on the foot,  I most certainly had to resort to a little weight beating. 

By Tuesday morning Sam's temp was still hovering around 38ºc despite meds so I made a doc appointment for him. Chris' phone rang several times during the consultation from a somewhat familiar number but we did not want to be rude and answer it. Upon returning the call we were advised that my x-rays had gone to the resident orthopaedic surgeon who had found a fracture. 

Pretty handy info to have had 36 or so hours earlier, or what?
Next step (or rather clumsy crutch-clutched lurch) was the fitting of an aircast and the countdown to a follow up        consult on the 28th. Over and above the pain and discomfort of this bulky apparatus in the middle of summer is the rather heartbreaking issue of not being able to take care of my lil smurfy dude... especially when he is ill :(

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