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, July 23, 2013

The lifting of spirits... becoming quite the challenge with our little smurf. There are very rare moments of happiness and peace throughout Sam's day...occasionally none at all. For the most part Sam is anxious, agitated, distant and pretty darn hostile to most things. It is an incredibly sorrowful sentiment for a mom to share about her is even more sorrowful when we're battling to pinpoint the cause/s.
And so we resort to one of the few things which still bring a smile to Sam's enchanting little face...swinging.  And lots of it.

...we swing when the sun shines...


...mesmerised by our swinging shadow.
(Not as mesmerised though as Mom about where his slipper's got to).  

We swing when the sun doesn't shine too :)

And, as terribly exciting as what it is standing swinging a little smurf for up to an hour at a time (although not as exciting as the neighbours having to listen to my swinging adapted songs : The Sammy on the Swing goes up and down (Wheels on the Bus), Old Macdonald had a Swing, Hickory-Dickory-Dock, the mouse ran up the swing...the swing struck one, the mouse fell down...and so on and so on) every so now and again we have to actually go inside and attend to life.  But never fear,  Sam's baby swing is near...

Swinging with Barney and Baby Bop

Ooooh! So that's where it went.

At best I'd have to say we're stagnating a little with Sam's progress but the truth is there's been slight regression with some things.  While Sam's still taking some "normal" food, we're back to a fair amount of pureed food.  Sam's heightened sensory defensiveness is the most troubling issue right now.  He is, once again, absolutely petrified of the "small things" he was doing okay with just a few weeks ago like being able to...
...I was just about to type "being able to stand and cruise along the bath in the evenings". 
Where on earth is my mind? I keep saying it's almost as if something happened (eg. a fall) to make him frightened again because even just handling him in your arms is pretty challenging, if you lean him too far backwards or sidewards he freaks out and grabs whatever he can hold on to as if you're about to toss him over the side of a 30-storey building.
And I just remembered that a few weeks ago, while standing watching me ready his bath he suddenly released both hands and took a nasty tumble, landing up with a swollen and bloody lip. I think I even posted a pic on FB (I've come to the conclusion that FB is my blog's greatest enemy). Okay, so that's one mystery solved. Now to try figure out why he has become so much more flappy and stim-seeking, frustrated and angry and completely distressed with the slightest bit of social interaction.   
Because of the amount of body-bashing Sam does to fall asleep and, during the course of the night, to get himself back to deep sleep, we decided a couple of months ago to change Sam's cot-bed set into the little bed.  However, despite the awesome custom-made bedguard Dad made, Sam refused to sleep in the bed. So, trying desperately to revert back to the things which had previously seemed to work for Sam (he was quite happy throwing his little body violently against alternating sides of his cot, it was us who couldn't bare to watch it) Dad put the cot-part of the combo back together over the weekend. 

Sam's quite happy to sit and iPad in his cot, but he's not doing a whole lot of sleeping in it yet.  Patience.

Sam's sign for "cry".  He keeps instructing everyone to cry. 

Random : Taking the Tubbies for a stroll and, even though it leaves little place for his hands, he insists on all four of them coming along :)
We're starting a new adventure tomorrow...I really have my heart set on it being a blessed adventure for everyone concerned so here's hoping...xox

Monday, July 22, 2013

The crushing of spirits... a heartbreaking matter, isn't it. It can occur for a number of reasons...being made to feel worthless, inferior, different, inadequate, misunderstood...whatever. And whether it happens often or is a fleeting experience, it still hurts the same.
It can happen to anyone really...young, old, typical or differently-abled. As folks of differently-abled children, we tend to find ourselves more often than not grappling with society's general intolerance of different when our hearts' treasures are treated unkindly, perhaps even with a tinge of self-righteousness (my way is better), purely because they behave/communicate/function in a way that is, for them, the best possible way to cope and meet their challenges but not what their peers are familiar with.
And just as our kiddies adapt each to their unique journey, so do we as their folks, right? Some folks are empowered, filled with passion to change the world, out there advocating and shouting from the rooftops. Some are a little more subdued, are too filled with passion but simply to carry their family through each day without surrendering and struggle to merely see life passed the rooftops. Some stagger drunkedly (not literally) between the two. Are any of these the more appropriate/accepted/superior approach? Is there an appropriate/accepted/superior approach? If there is, please do point me in the direction of its creator as I desperately need to take notes.
And yet...every now and again, when and where you least expect it, a little innocent utterance happens. A comment beginning with "Well I personally don't believe this-and-this but instead prefer that-and-that" or something to the likes of such. Sometimes it's far more aggressive, unguarded disdain for a question posed on a forum, a link shared on a social network. Could it be? Is it AT ALL possible that sometimes, oh very very occasionally, us mature, adept and informed adults might too frolick a little in the pool of intolerance and hautiness? Oh, have no fear, my pedestal of self-righteousness has crumbled to the floor as I most certainly have allowed myself at times to think "That's not how I would have done it..."
I posted a pretty harsh comment on FB recently after a few of our RTS kiddo's found themselves victim to varying degrees of, well, discrimination. (Hey, when it's one of your own, the gloves come off!) But in hindsight wondered how challenging it must be for children to practice complete acceptance and open-mindedness if us as parents, leading our children by example, struggle sometimes too :)

Thursday, July 11, 2013

I keep thinking to myself....

...I must remember to blog about this and I must remember to blog about that.  And then I don't. Blog or remember, not necessarily in that order. But I was adament I would blog tonight, so blog I will...even if there's nothing of particular interest in the post. 
So, matter of no particular interest No. 1 : Sam has a lovely, white "spot"on his tonsil.  It's been there for some time, just nowhere near as big as what it is right now and from what my good friend, Dr Google says, it's not going to be getting smaller on it's own...or with assistance. #sigh  There are also signs that the little smurfy dude might be coming down with something. Meg is slowly getting over a bad case of something nasty and Brampies has just picked up that something nasty so I guess it's inevitable that Sam will be welcoming the something nasty into his system any day now.  He's already not eating or drinking quite the same and fiddling non-stop in his mouth.  Oooohhh, I just remembered one of the blog items to remember.  At Sam's previous physio session he suddenly started scratching frantically in his mouth, particularly on his tongue.  Both Heidi and I were a little taken aback and I watched him like a hawk after his PT session as I was sure then already that he must be starting with a sore throat.  Luckily it never happened again that day, or for the rest of that week either.  The very next PT session it happened again! Within minutes of starting Sam was going frantically at his tongue. Have you ever heard of anything so strange? I know Sam doesn't always love physio but this brings a whole new meaning to the saying "it leaves a bad taste in the mouth" :/
Ah, another blog item to good friend, Marili (mommy to Sam's horse-riding partner, Antoni), introduced us to a wonderful group of ladies who belong to Iris House Childrens Hospice (I know I mentioned them in my last blog). Anyway, a couple of weekends ago we received an invite to the opening of a new McDonalds for Meg and Sam.  Meg unfortunately could not make it, but we went along with Sam and had so much fun. 
Being out in public with folks who are not going to stare at Sam's flapping/humming/spinning or look on in obvious disapproval at our ill-behaved and probably undisciplined little boy's "tantrums" when Sam has a meltdown, sure is a new and refreshing experience.  We received another lunch invitation this afternoon to celebrate Mandela Day  as a treat by a restaurant in a local shopping centre next Thursday.  Of course I RSVP'd straight away and cannot wait to meet more of our new Iris House Family.
Even though we're meant to be in the throws of Winter here in South Africa, we have been blessed with some really wonderful weather which absolutely cannot be wasted staying indoors.  We're fortunate to live just minutes away from a lovely little dam/pond and enjoyed a glorious walk there yesterday afternoon. I so understand the precarious situation our low dam levels might be leading us into here but, man-oh-man, I do so love warm, sunny at the risk of getting shot down by my environmentally-cautious friends (Brampies being one in particular who literally cringes every time I say this)...bring on Spring!

Aaahhh...the good old days when Sam still napped (even if just for 20minutes) during the day. Although taking a look at that smile, you'd think he'd slept for a good hour or two.  Daytime naps have, quite sadly, become a thing of the past with Sam which brings a whole new meaning to "suicide hour(s)" in this household. 
I know I wanted to mention that I'd seen the odd post on Facebook over the past week or so about a couple of Sam's RTS siblings being subjected to unkindness and, I guess more accurately, discriminatory behaviour simply because of their being differently-abled and I had fully intended to have a quick quirp on this but, frankly, I am too tired. And even if I wasn't, would it really make a difference? The sad truth is so many people judge others by how they look, how they perceive their behaviour and manner, what value that individual can bring into their own shallow lives. Ít's not something that's going to miraculously remedy itself.  The refreshing truth though is that there are still enough kindhearted spirits wondering around, who see passed a diagnosis and special needs, to give one hope and the strength to carry on. xox