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)

Monday, March 26, 2012

Smurfville goes GREEN!

Unfortunately not the eco-friendly kind...Meg started off the school holidays full of smiles and chirps after presenting her usual "A" aggregate report card, for which I can take no credit for as, with Sam's health been a little challenging over the past couple of months, Chris was the one who helped Meg prepare for tests, etc. I do have to say that I was a little surprised (and admittedly, a little impressed) that Meg still managed a good report because, apart from the fact that Chris goes alot easier on her than I do (if she gets something wrong I make her write it out a good few times and then recite it back to me a good few times and repeat-repeat-repeat if she still gets it wrong, while Chris will calmly say "You must just go over this-and-this again, okay?" to which Meg, with her hand already reaching for the remote control will go"Okay"), Meg's learn-a-phobia seems to increase with the onset of each new term. There is a life lesson just waiting to happen here...just not sure who is supposed to be learning it???

Friday's visit for Sam to the ENT had quite an unexpected outcome (more about that later) and so we decided to venture out for a super-quick breakfast on Saturday morning. Off we went bright and early to a (very) nearby restuarant in case Sam did not cope well with the outing and loaded with iPad, portable dvd player, a minimum of ten books and other the advice and tips gratefully sourced through the RTS listserv. And ironically, Sam was probably the most relaxed person at our table. We arrived really early so there were hardly any other customers, quickly placed our order and then, to our dismay, within minutes the place started filling up, which sudden rush brought with it a mom and her son who were placed at the table right next to us but before even sitting down, were both coughing and sniffing quite worringly...for us, at least. Swift change into super-speed mode as Chris and I gulped down our breakfast and drinks as quickly we could to be suddenly interrupted by Meghan complaining of stomach cramps and running off to the bathroom. Chris and I sat there for what seemed like hours, beads of sweat rolling down our foreheads and eyes frantically searching for the return of Meghan's blonde head so that we could quickly escape (I might be exaggerating just a little...but really, just a little). After ten minutes I decided to go in after Meg (a real challenge for me as I do not do public toilets unless it is an emergency...and in this case an eleven year old girl who has previously locked herself into a cubicle at McDonalds and only come out after a staff member had to climb over the top of the cubicle to let her out....not returning after so long was definitely an emergency). And there I found Meg, "playing steering wheel-steering wheel" with the toilet seat and insisting that she could not stand up without throwing up! To the amusement of the entire restaurant (because the toilets just have to be at the very back of the place) we left just minutes later, me carrying smurf and the contents of half our household and Chris carrying Meghan! I am chuckling to myself quite hyserically as I type this because it just had to look so terribly funny...but trust me, at the time it wasn't. So, after Meghan's shoe-fiasco last week (can't remember if I posted about it) and Saturday's events, Sam can no longer be held solely responsible for all our family's embarrasing moments.

It wasn't barely two hours later when I too started feeling nauseaus and so the remainder of our weekend was dominated by yet another bug.

And so sad too because, after Sam's ENT appointment on Friday, it seems that perhaps Sam's system is/was in fact on the mend. After the usual greetings and niceties exchanged with Dr V I gave him a brief rundown of how I'd had Sam at the doc just eight days earlier after noticing that Sam's tonsils were swollen and had several little white follicles on them, advised him of the course of Orelox (for once, completely and successfully administered to Sam in its entirety) and then noticing just the day before that the tonsils looked exactly the same. While gesturing for us to take a seat so that Dr V could take a look, he advised that a second bout of tonsillitis within five weeks was definitely a reason to remove them.

He had a quick look in Sam's ears and reported that they look great (WooHoo) and then looked in Sam's mouth (amidst the usual amount of gagging and protesting of course - Sam's, not mine) and said "Mmmm...but the tonsils aren't even slightly red, so he definitely doesn't have tonsillitis now!" to which I replied, "But this is exactly how they looked last week when I took him to the doc!!" which Dr V replied, "But then he probably didn't have tonsillitis then either!!"

I managed to compose myself just long enough to retrieve my jaw off the top of Sam's head to say (rather intelligently) "HUH?"

I managed to hear snippets of Dr V explaining to me that although Sam's tonsils are definitely still very swollen and do in fact still have a few follicles on them, it is more than likely just residue from the really bad tonsillitis Sam had mid-February...but in actual fact, all I could think about was the fact that, probably for the first time EVER, I had managed to get an entire course of antibiotics into Sam...and it had all been for N-O-T-H-I-N-G!!! Seriously? Anyone got a shotgun I can borrow? It's time me and that darn Murphy had us some words!

Anyway...moving swiftly along...despite the hour of travelling to-and-from the ENT for a barely eight minute, not-terribly-exciting consultation...the awesome part about all of this (apart from the obvious relief that Sam's tonsils don't have to come out just yet) is the hope that Sam's immune system is possibly, with the help of the Zithromax I presume, managing to recover...let's hope I don't have to change that last statement to "Sam's immune system WAS recovering" after the twin-tummy-bugs Meg and I were entertaining this weekend!!!

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