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...
SAMUEL - COMPLETE IN GOD
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 happening....to 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, August 12, 2010

THE NEW "DO" - PHOTO OVERLOAD!

Some quick Smurfy News just to bring you up to date on our little man :- Things were pretty dismal towards the end of last week, besides Sam's battling to breathe and drink, etc Sam was scheduled for an MRI on Friday to check for a tethered spinal cord, but because of his being so ill we've had to postpone until two weeks after he finishes the current antibiotic, so we are probably looking at the end of Aug/beginning of Sept. By Saturday morning Sam was looking so much better and had had a pretty peaceful night's sleep as well so we made a last minute decision to make the trip to Stilbaai, but last minute travelling plans being what they are I left at least half of everything we needed (from medicine, clothes for myself, bottles....no, REALLY, bottles!) at home. Sunday morning we were wondering if we'd got a little ahead of ourselves because Sam seemed a bit worse for wear again, but by Sunday evening he bounced back again. Sammy is doing WAY better than last week, he is on Day 7 of the new antibiotic and from Monday already his nose had started clearing up, making things like breathing, drinking and eating so much easier again. So, onto the pics :

It took Meghan and Chrisna all of about two minutes to completely destroy my mom-in-law's spare bedroom. But, understandably, they needed the room to be as hectically untidy and played-in as possible in order to feel at home :-)
PASS THE....UUUHH.....SAM?
Sam had to make up for plenty of missed "holding" time as we were last in Stilbaai in December. And doesn't he just look soooooo unhappy about constantly having a willing arm being held out to him? So, here we are with Tannie Janina...
and Ouma....
and Oupa even got a turn!
On Sunday evening the girls (Meg, Chrisna and cousin Elisma) and their Build-a-Bears put on a fashion show for us which took about five hours to prepare for amongst giggles, tears & loads of lipstick and perfume...and took all of about five minutes to present to us.

Sam of course had to get in on the act and modelled the eyewear!

The weather was MISERABLE with a capital BOO HOO as the girls were dying to go outside to play and we were very brave and even took Sam's stroller along to finally be used for something else other than carting our parcels around in in the shops. Alas, both the stroller and the girls remained in doors.
MY FAVE THINGS TO DO WHILE SPORTING MY NEW DO!
I have learnt that if I stretch out my arm and hand just so, Mom, Daddy, Brampies or whoever is holding me gets really excited because I am "showing them" where I want to go or what I want to touch which means I have loads of fun grabbing things like the tv remotes, magnets off the fridge, papers, cups....whatever my little heart desires. I have also learnt that then suddenly dropping the recently acquired object to the floor causes just as much excitement as they quickly bend to pick it up and place it in my hand again, just to have me drop it again. Weird!
Oh look! You can almost spot two of the four teeth I now have....three at the bottom and one at the top. It makes eating Scooby Doo cookies so much easier.

I love laughing at my big brother Luke who, like the rest of my family, goes to just about any lengths to make me laugh..they really are such a silly bunch. I sometimes wonder what passersby must think! Tsk Tsk!

Ohhhhh...and I do still LOVE labels and just flicking them with my one pointer finger, back and forth....back and forth....sometimes it even makes me sleepy and I feel myself nodding off. But, DON'T WORRY...I quickly recover because I know Mom would probably faint if I suddenly just fell asleep so easily and I don't want her to get hurt. I know she doesn't have far to fall but you never know what cat she might crush or toy she might damage on the way down!

I absolutely adore sticking my three fingers in EVERYONE'S mouth and then whangling them under the victim's tongue and scratching like crazy. But this bunch are such wimps, they moan and whinge in pain...as if it could actually hurt them. I mean, what's a bit of blood & broken skin if it makes me happy, after all.

Oooooooohhhhhh...I am so super sneaky. I pretend to whisper gently in Luke's ear that I think I might have won the "best do" contest...and then, without warning, go in for the kill!

He's just pretending that it actually doesn't hurt for the sake of Mom taking the photo, but more often than not he yelps in pain, especially now that I have these marvellous teeth to crunch the skin between.
Thanks for popping in - I hope you enjoyed seeing my pics as much as what I loved making them. Hope you'll visit again soon!

3 comments:

  1. loved all the photos.lots of love to you all.

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  2. HI Nicky
    What beautiful pictures, especially the ones with big brother Luke. Sam is so very loved by his siblings its wonderful. Your writing as usual is awesome and has us laughing our heads off. So happy to hear that Sam has recovered and that you got your little break away. Your Mom is such a proud Granny I have to scrape her off the computer screen.....We all send you lots of love and pray that you all stay well. God bless. Anthea

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