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, October 13, 2010

And surgery it be

So our appointment with Prof F on Monday went well...not "well" as in Yeah! No Surgery! but "well" as in Prof did a thorough examination of Sam (as always - much to Samuel's disappointment) and, after collaborating with his team for quite some time, explained to us in layman's terms the pro's and con's of the operation. Basically, the tethered cord has already caused some irreversible neurological damage in just these short sixteen months, so the thought of leaving it unoperated on just to allow further damage is so much more terrifying than the thought of Sam having another surgery so soon. For now though, Prof F is overseas and only returning in six weeks so we will confirm a date shortly after his return. In the meantime, Sam is going to see a urologist next Wednesday, to fully assess his bladder issues - not too sure how this is done with a sixteen month old smurf, but should prove fairly entertaining.

Sam has been a little miz today, first thought it might be because of tooth no. 8 which just started showing itself earlier this morning...but by this evening, when he became really irritable and no amount of dancing, singing or jumping could cheer him up, I started wondering if he isn't starting to come down with something...I mean, in all fairness, it has been a whole like six/seven weeks since he last had the chest and kidney infection so he's due anytime now for the bi-monthly illness. Both Chris and I are also feeling a little under the weather, so it's not impossible that Sam's feeling the same way but without having the ability to whinge and moan about it as clearly as Mom and Dad!

Meg had her athletics day today and managed to survive the actual athletics without any major accidents (which is pretty impressive as it seems almost impossible for her to go twenty-four hours without hurting herself) but, at the end of the day, she spotted me driving up to the parking lot to fetch her and tried to run along the fence to "catch up" to the car and, in the process of trying to keep the car in sight, tripped and took a major dive into the concrete which has left her with these really attractive deep purple and red wounds on both arms, both knees and an extra big one on her right side. At least in Winter most of her bruises..and her bruises' bruises...get covered in long pants but when it starts warming up, like now, it's pretty frightening going out in public with her wearing short pants or a skirt/dress because at any time you expect to hear someone stifling a hushed phone call to the child protection unit to report the obvious abuse this little girl must be going through to sustain such marks and bruises. We weren't home long before she fell down the ladder from her bunkbed...tsk tsk. And do you think it makes her more cautious? Not.A.Chance!! I cannot count the times I have caught her balancing on the edge of that bunk bed trying to hang paper butterflies from the ceiling fan, hanging over balconey railings, climbing on top of cars, trying to balance on the beam of wood from which the swing set hangs, balancing tip-toe and soaking wet on the edge of the bathtub trying to take something off the top shelf in the bathroom mid-wash. One night, almost two years ago, Chris and I heard this blood-curdling scream which at first we thought were the neighbourhood cat's fighting as it almost didn't sound human...but next thing Meg came out of her room with a mouth full of blood...AND CHICKEN, as while munching on her dinner (which is always finished like a half hour after the rest of the family) she had been doing somersaults on her bed and misjudged and fallen flat on her mouth...mid-chew. So an emergency room and massively swollen, teeth pierced lip later...and, before the blood on her lip had barely dried, she was at it again.

Let's just hope Sam doesn't get any ideas from her...hee hee!


  1. DARN IT!!!! absolutely amazed that damage was done so soon. Im sorry. Always hoping the best for you. always.

  2. You just never seize to amaze me with you wonderful humour amidst all the chaos. Must just be because you always know who has your back in all of the many challenges that you face on a daily basis. The toughest of us would no doubt have folded long ago but you just keep us all laughing and amused. Never knew Meg was such a tomboy lets hope Sam is not watching and learning here or you will have double trouble. The under the weather feeling is due to the weather being "under" right now and am wondering who stole the sun. Sam sure keeps you on your toes and the rest of us on our knees, will never stop praying that all goes well for him and you guys. Always in our thoughts lots of love, Anthea

  3. Hi Nicky, I am sure all will go well with the operation and sam the little fighter he is will recover quickly... Jodie is going for her mri in about a weeks time... Love Vickie