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)

Friday, December 2, 2011

No more faking, Sam!

We are still kind of swept up in the excitement and thankfulness of the blessings Sam received earlier this week. I say "blessingS" because not only did we receive the super generous sponsorship from Lancewood but a little later on Tuesday received yet another, equally generous, donation from an amazing family in their personal capacity, if not more appreciated because of that. Stan & Jodi - your compassion and delight in wanting to help Sam be the best Sam he can be, is awesome and truly inspiring. Our true thankfulness goes far beyond what any words can express. xxx

Our little conqueror smurf is completely oblivious to what amazing events have being taking place all around him this week, except maybe as to why Mom was bawling all the way to OT after receiving a certain phone call. But who can blame him as, after a particularly fussy night on Tuesday ("fussy" meaning that instead of thrashing and rolling around every 20-30 minutes, he was thrashing and rolling around every 2-3 minutes) and a sudden refusal to drink or eat on Wednesday afternoon, our GP confirmed yesterday morning that Sam yet again has a red, bulging ear drum. (I am NOT even going to go there!) So, he's on a five day course of Orelox, which of course tastes simply smashing, until his ENT appointment on Tuesday, which ENT appoinment will undoubtedly lead to grommets...soon! My initial "plan" was to try and stretch the grommets procedure until the 14th December, for which his surgery to take care of that little right testicle was originally scheduled, in order to avoid two anaesthetics so close together. But there goes that plan out the window with the testicle surgery now been moved to Jan. Now we're still facing two anaesthetics so close to each other. *sigh*

Perhaps Sam HAS picked up on all the good things happening around him, as he has certainly become more verbal if to say "See, I'm doing my part too!". At last week's speech session, Sam thoroughly enjoyed some mirror-time, so I found a loose mirror we had lying around (Uhhmmm...if swiping it out of Meghan's room could be considered loose) and have placed it in Sam's little play area and he spends ages on his knees in front of it doing all sorts of things like different assortments of hand-clapping, some drumsticking on it (there just had to be tapping/knocking somewhere) and even some self-awareness exploration like touching his own face, then his head, then his knees...he even pulled his own hair yesterday! (Told you those little fingers have a mind of their own). It's probably been one of the most worthwhile additions to his toy collection - who woulda figured?

We've yet to receive any news from SARS as to whether they do indeed agree that RTS is an actual disability, making me wonder if perhaps they've decided otherwise. In light of this I wondered to myself if perhaps we are not the ignorant party, so sat Sam down last night and decided it was time to get down to the crux of the matter. I said, "Sam, apparently SARS is under the impression that you are faking a disability. So, scadaddle your little rear-end off this bed, march down the passage to go ask your dad to make you a sarmie while I quickly get rid of all the accessories, meds, books and other tools we've accumulated in lieu of your supposed special needs."

Anyway, I've gotta run...we're off to SARS quickly! I'm going to ask them to take a quick look in Sam's ears for me...what with them being such profound medical experts I am sure they can tell me whether there's any improvement!

In closing, some pics!

Sam refining his DJ skills...for whatever reason, he loves spinning the discs around in their covers!
(No, we don't expect these cd's to be readable for much longer!)

Having a chat to Dad!

Sam bringing new meaning to the term "parallel play" 

1 comment:

  1. Nothing like a bureaucrat to make your life difficult!