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)

Wednesday, July 18, 2012

Hallo World :)

Smurville has been somewhat busy over the last couple of weeks.  We took a short trip to Pearly Beach to spend a few days with Granny...

M & C - totally fed up with being couped up in the car...although their being couped up was largely due to the number of bags they dragged along filled with toys and Build-a-Bear clothes. 

Greeted by Pearly Beach with an awesomely warm and sunny afternoon...

...which means we were barely unpacked before we had to take a walk to the beach. Sam has developed an issue with having socks on his feet. Yes! In the middle of Winter.  So he kept M & C busy by randomly and sneakily throwing both his socks and shoes out the back of the pram.

Such a treat in Winter. And apparently the water was not THAT cold. Barely tolerating the cold sea water in the Summer, I simply took the girls' word for it.

Sam so not impressed with having to tolerate both sand and cold. Bet you he was regretting shedding those socks and shoes!

Day 2 unfortunately stayed overcast and rainy - but that wasn't enough to keep the girls from the beach.

Sam snug and safe behind his wind shield, listening to the iPod which was obviously playing Two Dickie Birds

Shortly after returning we, half uncertainly, signed a mandate to put our house on the market and then enjoyed the last few days of the school holidays with a lovely visit from Sam's RTS brother Matt and his family, a couple of playdates for Meg and just some at-home time....

...which Sam adored as having Meg at home all day meant fun games like Hoola-Hooping with his big sis :)

...lazy morning lie-ins with Dad just chilling and watching tv...

...and a new haircut!

Silly Giggley Smurf

Monday morning's back-to-school was a bit tough for Sam as he'd had three glorious weeks of sleeping in till after 8am most mornings but he's sure to get back into the normal early morning routine soon...just not so sure I will...LOL! 

On Tuesday Sam's orthopaed advised that, after deliberating with his colleagues, it has been decided that Sam no longer needs to have surgery on his left foot.  Apparently there is one type of epiphyseal bracket which can rectify itself with time and it appears as though that's the type Sam has. We celebrated (again) like a bunch of crazy loons.  It's almost hard to believe when I think back to what that little foot looked like when Sam was born. It was so severely turned upwards and inwards that I could barely imagine him ever being able to walk on it.  Now there are times when Sam is weightbearing when it's almost impossible to see that there's something different with that little foot....without the help of any strapping, plastering or even orthotic boots. 

Earlier this evening we accepted an offer on our home, rendering it (pending mortgage approval for the buyer) effectively sold.  We're a little shocked that it happened so quickly.  We're a little sad at the thought of saying goodbye to the place we've called home for so long. But it is what it is.  A new challenge.  We can't have life getting all boring and predictable on us, now can we?

We had a bit of a heartsore moment last week when Sam and I had been sitting on the couch sharing (as Sam insists with anything he can see me eating) my bread-and-butter pudding. Once the bowl was almost empty, Sam gingerly took the spoon and looked as if he was about to lift it to his mouth.  Brampies and I jumped up and down with excitement. Sam does NOT touch his food or bottle or anything remotely digestible.  But instead of lifting the spoon to his mouth, Sam's hand went completely over his head and dumped the contents of the spoon down his back. The second attempt delivered a squelchey dollop of pudding in his neck.  At first we laughed. Then the realisation that this precious little boy, try as he might, could not navigate the spoon to his mouth hit me like a punch in the face and I remembered a particularly awful joke many of the boys delighted in telling when I was still in school.  It was not a good moment.  I discussed the incident with Sam's OT at yesterday morning's session as well as Sam not being able to articulate signs that effect his face. It seems as if Sam's spatial perception is just completely out of whack and we need to work more aggressively on developing that fine motor planning. 

That's the last two weeks in a nutshell.  As far as other sensory issues go :  hairdryers are back in - as long as they're not being used on Sam, vacuum's are tolerable again - as long as I am not the one doing the vacuuming, the handheld food pureer is back in - a huge Yay! for our wallets but what a massive loss to Woollies.  The sound of the cat meowing on the Zoo iPad app is out, Lala singing "Rabbit. Rabbit" on the Teletubby nightime dvd is a MASSIVE out and crawling over mini-obstacles in physio (which Sam could do without a blink of an eye up until last week) is now a definite out! And when I say "out" I mean that it makes Sam bawl as if he's quite possibly in pain. Like I boring or predictable...

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