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)

Tuesday, January 17, 2012

Confucius says.....

....he who is confused by good news needs swift quick up the bum!

Okay, Confucius didn't really say that but he darn well SHOULD have!

I spent the whole of yesterday with my cellphone almost literally attached to me, waiting anxiously for Doc S to phone in the blood tests which, after a few difficult days with Sam and a couple of funky urine analysis' on Sunday, we were almost certain would confirm that Sam has Hepatitis A. Although I couldn't for the life of me imagine how Sam might actually have caught Hepatitis as we don't generally serve poo sandwiches at Cafe de Beer and having to postpone Friday's surgery would have been nothing short of devastating, it was also a sort of relief knowing what has been causing Sam's generally being "unwell' lately - it's now been five days since he ate properly and almost just as many nights without proper sleep. So when Doc S did phone this morning (after apparently having already sent me an sms yesterday - which sms was more than likely deleted by a certain finger happy smurf while watching video's on my phone) and said that Sam in fact does NOT have Hepatitis, I had a rather lengthy ''Huh?" moment which must have left him wondering what the heck kind of mother am I that sounds more disappointed than relieved that her child is not sick. I had just really expected the tests to come back pointing to Hepatitis so it took a moment for the news to sink in.

So, of course, it means we are all good to go for Friday's surgery. Sam will still see Doc S for his usual pre-op examination on Thursday, especially as Doc S thinks the funky-urine-analysis gremlin might be because of a viral infection but if all goes well, God willing, Sam will be minus one seriously disruptive little testicle by this time on Friday.

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