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, June 26, 2014

Little Mr Smarty Pants

There is a song...about balloons... and colours...on Youtube. It is called... wait for it..."The Balloon Song (for learning colours)". Go have a listen. I did try download the link so I could share this delightful song with all of you but it automatically starts playing this song of delight and as the lil dude is lying sleeping next to me I can think of nothing more irritating right now than having him wake-up and demand to hear The Balloon Song. 

And demand he will because Sam listens to The Balloon Song on average (and no, 
this is no exaggeration) about 50 times. Each and every day. And while I don't deny the role The Balloon Song has had in Sam learning his colours, it does not take away from the fact that it is the most stuck-in-your-brain-like-no-other-song-in-the-history-of-all-songs kinda song. And yes, at random intervals throughout the day we will all find ourselves, to our horror, singing The Balloon Song.

And yet still, none of us have quite memorised the correct pattern of the song as Sam has. On Thursday evening Sam and I were enjoying our usual bathtime singalong and started on our first rendition of TBS. I sang 'red balloon', Sam signed 'red balloon'. I sang  'blue balloon', Sam signed 'blue balloon'. I sang 'green balloon', Sam signed 'white balloon'???

Uh no Sam... it's green after white. Started over but the same thing happened. And again. Eventually I asked Meg to bring me the iPad so I could help Sam right. The song started (feel free to sing along folks)

'Red red balloon, floating in the sky.

Blue blue balloon, floating up so high. 

(See? The lyrics are riveting!) 

White white balloon.....'

Say what? What happened to green? Oh pish posh. Green? White? What's the big diff anyway? Lol! 

Only after did I think about the dangerous can of worms I might have opened by bringing the iPad into the bathroom but thankfully there was no request of this kind from Sam the following night. And nevermind twinning (a fascinating quirk RTS peeps have which requires that they be, for instance, watching the same movie on their iPad and the tele at the same time) Sam has now acquired Tripling... with TBS on tv, on his iPad and homemade balloon flashcards for that extra tactile effect!

We've had a bit of a disappointing setback with Sam's teeth. Sam was meant to undergo a dental procedure this coming Wed to (finally) remove that little chipped front tooth (little as in milktooth and the minimal amount of actual tooth left after being ground right into the gum by the bottom tooth). However the dentist's office phoned on Friday morning to say that there's been some or other misunderstanding and Sam's procedure has been rescheduled for the 23rd July. What??? I'm having to keep the kid on 4-hourly doses of painmeds to limit the amount of mouth-bashing and obvious pain and discomfort he's in. Just waiting till the 2nd was gonna be a long stretch, how will he manage till the 23rd. Very distressing indeed. We all know how awful a toothache can be. So we're trying to get another anaesthetist on board who might be able to fit Sam in on the 11th July... please hold thumbs that this works out and he doesn't have to endure another 25 days with this wretched tooth :( 

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