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)

Saturday, February 5, 2011

A cotton-mouthed, blurry-eyed, PROUD Mama!

So let's start with "Why cotton-mouthed and blurry-eyed?". Well, because I have managed to acquire yet another charming sinus and throat infection. Yah me - that put's me in the lead for the Who Consumed The Most Amount of Antibiotics Race beating Sam's six courses in eight months by a mere one month, at six courses in seven months. Any suggestions for a prize...maybe a year's supply of probiotics? So this particular antibiotic has the most awesome side-effects including the Me, Myself and Irene cotton-mouthed scene I've blogged about before as well as a healthy dose of blurred-vision which makes typing this post extremely entertaining (we won't mention the fun involed with sending a text message). why proud? Luke Skywalker (not after the movie but because his head is permanently in the clouds) and Princess Meghan have a very "spirited" relationship, to say the least. If there is an opportunity to have a dig at each other or, better yet, get the other one into trouble...they very rarely miss it. Yes, occasionally they get on okay but, as they get older, more often not. A blessing though is that they both completely adore Samuel and have never once shown any resentment towards him regardless of the amount of sacrifices they've had to make in his favour or for the amount of attention he requires from us. In fact, I'd go so far as to say they are both (especially Meghan) a little neurotic about his wellbeing and still "freak out" about things we've come to accept as normal behaviour like throw-ups, apnoea's, etc. Meghan does not take her eyes off Samuel in the mornings on our drive to school (he's had a few apnoea episodes in the car, which really upset her a bit) and she spends a good five minutes before she gets ouf of the car, making sure he has something like a toy or book to entertain himself on the drive home and also to check that the blanket/sun shield is correctly in plave to avoid  any sun getting to him. As I've mentioned before, after I fetch Meg in the afternoons we drive the twenty-five/thirty minutes to collect Luke (except on the days when Brampies is helping out) and time it that we get to Luke's school with just a minute to spare in order to avoid having to spend unnecessary time waiting around and, to this purpose, I've asked Luke to come out as quickly as possible seeing as by that stage Sam has already spent over an hour in the car.

On Wednesday during Luke's last lecture his class had become quite rowdy, upsetting the teacher. Literally minutes before the bell, the teacher informed them that they all had to remain in for a half hour as punishment....and what perfect timing on a day when the temp was hovering around the mid-30Âșc's. Luke tried to explain to his teacher that Sam would be extremely uncomfortable in the car, especially with the still healing wound on his back but the teacher refused to listen to him, so Luke said "I'm sorry, but I cannot stay in today" and left the class. At first I was furious with him for being so disobedient even though I felt it was terribly unreasonable for the teacher to completely disregard teh inconvenience he was causing to pupils who had to catch lifts/public transport. But when Luke told me why he'd left, I had to admit that I was really impressed that he would go to such drastic measures for his baby brother's wellbeing. Thankfully, when Luke had to go see his Section Head the next morning, he agreed that Luke had had a valid reason to leave and just told him that, if he ever finds himself in a similar situation he must first come and chat to him before just leaving. Kudo's to you, Mr S.

Isn't it so sad though how some people really just don't seem to care about others? How difficult is it just to treat your fellow man with common courtesy and consideration? Sam's been having some really distressing apnoea episodes again and, since he's recently become a little too tall for his Snug n Safe carchair (granted - it is technically only meant for 0-9mths) which used to be next to me on the front seat, he's now in his "big boy" carseat at the back which makes it a little more difficult to reach him to "nudge" him to take a breath. On Thursday morning while driving Meg to school this very thing we were going over a bridge at that moment with no place to pull off to the side and in bumper-to-bumper traffic so making a sudden stop very dangerious, I simply slowd down a little without going below the speed limit, literally for about three seconds, so that I could safely reach back to give Sam's leg a tug . The elderly gentleman behind me in a silver Ford Fiesta, convinced that I had carefully orchestrated this master plan with the sole intention of disrupting his entire day, became so upset that he literally sat centimetres away from my rear-end (or rather, my car's) and then, with screeching tyres, overtook me the second the road widened...only to get caught at the very same traffic light moments later. Inwardly I was saying NA NANA NA NA NA but outwardly I just smiled in his direction, while some time ago I probably would have become just as angry as what he was (but at least justified) and would have given him "the glare" when I pulled up next to him instead. My friend Selwyn mentioned in his Daily Devotional Bible the other day that, regardless of where we stand in our Christianity, many of us (including himself) recognise the "above the water" sins, the obvious ones like jealousy, anger, etc etc but fail to acknowledge, perhaps, a more debilitating sin....a "Little-Known Sin"...the sin of demandingness. He says "You won't find the word in the Bible, but you will certainly see it illustrated there. Demandingness is insisting that our interests be served irrespective of others."

I thought "WOW"! Imagine if our world was devoid of demandingness and there were no incidents like impatient, reckless drivers or uncompassionate teachers, to merely skim the top of the barrel? What an amazing end to aspire to but, oh, how craftily this demandingness sneaks up on you like, for instance, by expecting two unknowing folks to express tolerance and sympathy towards your own circumstances. Something worthwhile to strive towards, this riddance of demandingness.

On a lighter note...Smurf's vomitting is, yet again, in full swing (isn't it strange how there always seems to be more coming out than what went in?) and he has also started a new "thing" where it appears as though he is flinching by closing his eyes and sort of pulling his face funny and then sometimes goes squint when he re-opens them - it has us quite puzzled but only lasts about 2 seconds max, although sometimes he does it five or six times in a row. Mmmm...not much of a lighter note! Anyway, Sam's use of his leg comes and goes although I think I'm past the point of stressing about it too much and literally just take each day as it comes. Sam has also managed to pick up a little bit of weight and now weighs 9kg. Wooohooo! Dr S prescribed a new anti-histamine which stimulates the appetite (we were hoping it would stimulate some increased sleep too, but no luck yet) and it has definitely made a HUGE difference. Most exciting though - Sam's understanding of language literally increases daily, even though he appears nowhere near being able to use it as a form of communication himself. Still, he is quite adept at getting across what he wants us to do purely with his own version of "sign language" (which interestingly enough really only requires one tiny but determined little finger). I am having loads of fun trying to establish a good combination of Nestargel and Pediasure, which needs to be mixed with cold water but, as Nestargel starts forming a type of "film" as it starts cooling, means we have to mix the two while the Nestargel is still warm which then just forms lumps of Pediasure and then just lands up separating in any case. Like I said...LOADS of fun. The Pediasure is also a little thicker than the normal S26 so also have to figure out the right combo of Nestargel powder (where just 0.5grams effects the thickness) to water. At the end of the day, I usually end up with what appears to be a Nestargel-Pediasure Late which looks like this :

Sam still has this adorable habit of, when looking/investigating something, he has to have his face almost flush with the object...kinda like this :

He does it when he plays on the keyboard, looks at a book or even when he's in the bath and checking out the water...which means he occasionally ends up with an ear full of water or a sprinkling of foamy bubbles all over one side of his face.

That's it for now! My eyes do seem to have cleared again, for now, but I am way too tired to go back and check for any typo's - SORRY!

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