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)

Saturday, February 26, 2011

Meg's "Night" Marathon & Paper-Eating Smurf

The last few days have been pretty uneventful...same old, same old. Wed's physio did not go as great as last week, although Sam did not reach his, once usual, over-the-top hysteria he did moan and whinge through much of the session. Thursday was speech, which this time went much better than the previous session. Hey, it can't always be sunshine and roses!

Friday night brought with it the annual "Night Marathon" at Meg's school..."night" meaning from 4:00pm to 6:30pm for the Grades 1 - 5 and "marathon" meaning relay races of approx 200m a turn. Looking at it from a nine year old's point of view - "night" + "marathon" = super excitement. The past two years Meghan was pretty convinced she was going to participate and then both times pulled out at the last minute so when she said she was going to do it this year, I wasn't completely convinced so, although I tentatively considered what options I had with regards to managing Sam for those two and a half hours, I was pretty sure that closer the time I wouldn't need to worry at all. As luck would have it, come Friday morning and along with it a hectically windy day Meghan was determined to be there on Friday evening. Before knowing the weather was going to be so poorly, I had considered taking Sam with us even though I had no idea how I would manage the two bottles and supper he usually has during that time, none of which he will take cold or even room temperature. But with that kind of weather, taking him with was starting to look like not too great a plan which meant Chris would stay with Sam and I would go on my own (as usual). Also not a great plan because our little man IS so fussy about who feeds him.

A quick side-step : in many of the stories our RTS families share is the rather sad reality that, for whatever reason, a "special needs" diagnosis often brings with it the loss of some friends and, sometimes, even family. However, it also sometimes brings with it NEW friendships with deeper meaning and stronger bonds due to your changed circumstances and I truly believe that we have been blessed in this way, many times receiving offers of assistance and just general compassion and empathy from wonderful people we might otherwise never have gotten to know better.

One such person is the lovely mom of one of Meg's best friends (or "BFF's" as Meg puts it) who was really keen to help and so we arranged that Meg would go with Jen-Jen to the marathon and, after giving Sam something to eat and drink, I would follow a little later to at least catch some of the activities and bring Meg home. There was a Plan B though...Plan B was that Brampies was prepared to look after Sam for an hour so that Chris and I could go together to the marathon BUT only if Luke was going to be home to help out, if necessary, and that is eventually what happened. Brampies was SO worried about having to give Sam his supper though, although Luke felt pretty confident about doing it if need be, having plenty of Big Brother experience by now. So, after giving Sam a bottle, off Chris and I the school. It felt so completely strange, the last time the two of us were really alone together without our little smurf was when Sam was still in NICU. And we only returned home TWO HOURS later and what did we find? A perfectly content little Sam and a slightly stressed and exhaused Brampies from walking Sam's little 9+kg body around for two hours...hee hee! Sam only ate about half of his supper but we were home early enough for me to still give him a "top up" so all went extremely well. Which means that that much-spoken-about dinner for two Chris and I have been mulling over for the last two years might actually become a reality pretty soon and with Brampies now being a CSS (Certified Sammy Sitter, as dubbed by yet another one of those "lovely moms", Aunty Mandie) we might even be able to relax and take a little more than the forty-five minutes it took us to "down" our sushi the last time, having Sam with us.

So, in closing, some pics of Meg at the marathon and, of course, some random pics of our Smurf.

 Can you spot Meg? She's the "little" one in blue, almost a head smaller than her classmates (I am sure she's so chaffed to have her mom's genes). Here she's waiting for her turn to run, afer she spent the first hour and a half of the evening chatting and socialising.

 Waiting for the baton from her classmate.

 Getting ready to go.....

 Uuhhhhmmm....still getting ready.....

 Okay, S.T.I.L.L. getting ready...all she needs now is to actually move!

 And she's OFF! FINALLY!

Both Meg and friend, Anrich, were bitterly disappointed that they did not win the lucky draw at the end of their race (which they insisted we wait for before leaving). After all, buying one of the like four thousand tickets is practically a 99% guarantee that you WILL actually be getting the prize.

At the end of it, Meg had a great time and I am so glad we did not take Sam with us as by the time we got home my ears were ringing from being subjected to that chilly wind for so long.

 One of Sam's favourite snacks is a chocolate marshmallow egg which, amazingly enough, he very seldom gags on. We spent most of this morning in the shops looking for a new bike for Meg's birthday, coming up soon, so because he was so well-behaved and patient with us, I thought a choccie treat was well deserved by our smurf.

 The treat was over way too soon for our little man, so he thought flashing those gorgeous puppy-dog eyes at me might get him another one!

 And, when that didn't work, he thought he'd try some hand-clapping!

 "Oh come on, Mom! What else must a poor kid offer? A gorgeous smile?"

 "Oh well, maybe if I shake it hard enough some more will fall out...."

"Desperate know what they say! Surely the thing the choccie comes in must taste good too?"

And, talking about eating paper...on the way back from dropping Meg off at Jen's house yesterday afternoon our little smurf became awfully quiet in the back of the car, after first moaning like crazy at having his travel-entertainment (Meg) gone. When I looked behind, I saw him chewing furiously on something and then, horror of horrors, he started closing his eyes about to fall asleep, with his mouth all covered in something green. I looked in his hand and there was a half-eaten pamphlet that had been lying in the car. Panic set in as I realised that a fair amount of the paper was missing and, with Sam practically asleep, he was either going to swallow it and choke or gag and vomit. I first swerved to the left of the road but then realised there was no place to stop, so swerved to the right again to try and turn off and thankfully the traffic light turned red. I put my hazards on and practically jumped into the back seat and stuck my finger into a now sleeping Sam's mouth. And there, neatly compacted with an astronomical amount of gob, in that wonderful little "cave" that is the high palate of our RTS sweeties was about 90% of the missing portion of pamphlet. Where the other 10% got to, who knows!  I can only imagine that he must have swallowed it. But how my gag-loving, oral-aversion-prone Sam did not gag on the paper I do not know, as at least it would have warned me about what he was up to. Never a dull moment folks!


  1. Hi Sam
    My name is Jenna and I came across your site. You are an inspiration and a brave courageous fighter and hero. I was born with a rare life threatening bone disease and disabilities. My site:
    I love it when others sign my guest book.

  2. Way to go Meg! I'm so glad you participated this year! Nicky, my trick for feeding Dominik out is to bring warm/hot water in a thermos for mixing his formula (he also prefers warm milk)...but if it's too windy and cold, it's no place for Sam! Sam, Natalie also loves those chocolate covered two could eat yourselves sick with them!

  3. Oh Cindy - you are just BRILLIANT! That is such a great idea. Thank you. xxx

  4. Well done Brampies for babysitting!!! Well done Smurf for letting mom and dad go out ALONE!!! Well done Mom and Dad for being brave enough to go out ALONE!!!!

    PS Loved that big-puppy-dog-eye photo. TOO CUTE.

  5. Way to go Nicky at long last and especially well done to Grandpa who is so great to let you out of the house ALONE!!!!! Love the pictures, Meg is so tiny next to her peers must be a family thing. Those blue eyes of Sams are infectious just cant resist them. We all know where the sweet tooth comes from and I am glad to say its not from our side of the family, you will have to keep your eye on Grandpa with this one.