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, June 21, 2012

Inaugural World RTS Day - 12 Days to go

Just 12 days to go until the very first World RTS Day !!!

I had so many idea's of what I wanted to do en lieu of my contribution to making this initiative a success....sending several articles to as many publications as possible, trying to get two or three radio stations on board, seeing if Derek Watts has an available segment the Sunday know, keeping it low-key but "out there" nevertheless. 

So what happened? Well the problem was that each day, when Sam dropped off for his daytime nap (don't laugh) I was so overwhelmed with what to do with ALL that free time that I would work myself into a complete flat spin trying to prioritise what to do first....finish reading that, much needed, book sent to me months ago by my a good friend...put a hem in the two pairs of pants purchased about a month ago (Seriously? Is it really that impossible to entertain that some adult women really do have legs not much longer than 60cm?) that I still cannot wear (there's always Winter 2013, right?)...have breakfast, breathe, etc. But before you know it, my 3 minutes are up and Sam's awake. 

So sadly, all I've managed so far is two really brief articles to local newspapers...and the one, I fear, might not really be the most appropriate platform as it appears to be a type of entertainment/out-and-about publication....Googling email addresses late at night and when in a hurry is NOT always the most intelligent idea.

At least, with exams finally over (and, hopefully, all the sulky study tears that go with it) and schools closing up tomorrow there'll be a little less pressure in the's hoping I come up with a brilliant idea within the next 11 days....there's a first for everything after all.

Some brief Smurfy News (my 3 mins are almost up) : Sam's SPD is still keeping us on our toes. While tactile defensiveness continues to improve, his audio sensitivity rages on and now extends to the little hand processor I use in the evenings to puree Sam's food...and I thought me having to walk around with wet hair in Winter was a tough one (to avoid using the dreaded hairdryer), try having to puree foods such as chicken without an electrical appliance.  Thank goodness for Woollies fresh baby foods - even though it means Sam's food bill alone is closing in on the rest of the entire household's. 

With regards to therapies : we are still doing loads of supported walking with Sam to keep that right foot flat and hopefully also help him get over his fear of being on his feet. Some days are better than others, as with everything, when it looks like Sam almost wants to take a step on his own...but then there are days when he is so afraid that he basically walks at a 45ยบ angle from leaning back on me so much. Sam's signing is also all over the place with days when he is quite successful in accomplishing the more intricate actions required for some of the signs and then there are days when it seems as if he can't articulate a single correct sign.  Something quite fascinating I've noticed is that, even though Sam can point to his mouth and nose when performing the actions to the song "Head Shoulders Knees and Toes", when using signs specified to areas of the face, he focuses them all on the side of his head, eg. the signs for pig, bottle, daddy, cry, etc. I asked Sam's ST about it this morning because I find the whole thing quite strange, especially as perhaps the obvious reason might have been hand-eye coordination issues but then he wouldn't be able to fairly accurately touch his mouth and nose (surely?). ST suggested I mention it at Sam's next OT session. 

We have an appointment this afternoon with Sam's orthopaed (feet) and, aside from doing the usual routine examination, will more than likely confirm a date for Sam's foot surgery.  We're continuing with our therapies next week, despite the school holidays but are taking a two week break from ST and OT and are hoping to spend a couple of days in Pearly Beach with Sam's granny :)

1 comment:

  1. Sam's progress sounds so familiar...if you put it on a graph, Natalie's progress with everything looks like a lot of up and down scribbles, but the trend is slowly "up"! I'm sure there's a mathematics term for that, but I don't know what it is: trending up? Just when I think she will never master something, she does. I keep telling myself that I need to remember that this is how everything is, but it's hard to remember in the desperate valleys. Hugs to you and prayers for persistence...that's what always worked with Natalie. Also, Natalie would have "holes" in her skills similar to what you describe with Sam's signing. For instance last year she could read and sign "red" and give you a red crayon if you asked for it, but if you point to a red crayon and ask her what color it was, she couldn't tell you. We've found that in a lot of other areas: holes that seem like she should have learned something because it's related to a skill she does well Except she hasn't. So just to encourage you that he'll get it one day!