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, 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

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