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, October 24, 2013

We're off on a hunting expedition... why does that sound so familiar?

This particular hunting expedition takes place at Sam's paed's office and, very hopefully, will bless us with an awesome treasure...which treasure would be in the way of some sort of explanation as to why our little smurfy dude is still travelling along that road called regression. I do so hate that road...bleh :(

We're still stuck in that place where walking with the walker is an absolute no-no, even walking with me holding him involves loads of frights and surprisingly-potent pinches on whichever part of my body happens to be within reach (usually that tender spot at the back of the arm), bath time has again become a series of suddenly crouching forward in fear of the awful...uuhhmmm...nothingness behind Sam in the bath (!). Super clingy is a major understatement as Sam brings new meaning to the term "separation anxiety" which means lucky me (whoop whoop) gets to be in bed before 8pm EVERY. NIGHT. We're doing some great v-wording again too, mostly at night.

Usually this type of regression tails on the back of some sort of pain, usually from a surgery. But we've not had a serious surgery since the last testicle repair.  Which is my real concern at the moment...Sam's last remaining little testicle has gone M.I.A. I am hoping that perhaps it has just been in hibernation during the Winter and has not yet realised that (finally) Spring has sprung.  I have tried quite a few times to...uuhhmm...locate it, but can't feel it anywhere.  I am hoping that Doc Paed will perform a more confident examination and find it hiding away in a little corner somewhere because, honestly, another surgical repair for this particular issue will just not be a ball of fun :D

A quick glimpse into the last few weeks via some pics...

Sam had a pretty mean throat infection during the school holidays which inevitably landed up in some croup, which inevitably landed up in some v-wording

Not even going to delve into the disaster that is sleep (or lack thereof) but apparently pretending to be asleep is quite comical to Sam

Sick little Smurf

Venturing onto (and apparently quite liking) the big boy swing at Aunty Christa's

Embracing his paternal instincts


The warmer weather meant being able to get outside a little more, although the nasty South-Easter is trying bitterly to keep us inside. Boo!

How we spend bathtime.

iPadding in the dark when I'm meant to be sleeping. Tsk Tsk.

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