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, December 19, 2013

Words and Steps

Having just finished supper one evening last week, chinwagging about this and that, Brampies wondered out loud what Sam would be like if he did not have RTS or SPD.
I said that I think he would be very intelligent, quite cheeky, have an excellent sense of humour, be rather mischievous, extremely demanding and strong-willed but loving and affectionate too, you know, kinda like he is now....just with words and steps :)
At the moment though, words and steps are not flowing in abundance. It's been more than 6 weeks since that solitary word and not a single one more. Sam had quite a major fall with his walker, which I thought would put that one to rest for a while too but, both strangely and thankfully enough, he was quite happy to use the walker again the very next day. Sam was doing quite well with walking while holding one of our hands and then seemed to become quite fearful again. We still try at least once a day to give it a go...sometimes it works, sometimes it doesn't. This evening I was in the bathroom, getting Sam's bath ready and out of the corner of my eye I saw a little person...just a single, little person...walking round the corner. Honestly, my heart simply stopped...I couldn't move, couldn't blink...for a millisecond, until I realised that the single, little person's hand was actually attached to his, only then visible, Dad's hand. Disappointed much.
We are two weeks into our six week school holidays here, with the 2013 school year having ended on the 4th December.  There have been plenty of award ceremonies, concerts, recitals and all the other year-end happenings...most of which Sam did not tolerate all that well.  He lasted all of about two minutes into Meg's ballet recital before Dad had to head home with him, screaming and pulling hair like...uuhhmm, a kid with SPD actuallly. At least I got to stay till the end #Yay 


A recent addition to Sam's list of "hostile"sounds is water. The sound of the waves at the beach now freak him out, the sound of a sprinkler going, the water hitting the ground when Brampies or Dad waters the lawn. No less alarming, was the sound of the garden house filling our little pool for Summer.  So much so that Sam had a mini-anxiety attack every time we needed to walk past the pool (now full) over the next few days. Until we managed to coax him in of course. Then every time he saw the pool he asked, with his most charming sign language, to swim. Even on the way to OT one not-so-sunny morning at 9am.  And of course the moment he spots Meghan taking a dip, he requests so desperately to join her that there often isn't even time to grab his swimming trunks. Meg, being the awesome big sister that she is, has been very accommodating so far...

 And then there's this...
The little smurfy dude has taken to watching his Mr Tumble dvd's like this. Any time spent off his knees is welcomed, nevermind how darn cute he looks. He hasn't quite tried to "sail" along the furniture yet, but just having him feel comfortable enough to stand up again is quite huge. Baby steps, right? 

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