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)

Tuesday, June 1, 2010

FORTY-SIX HOURS and counting down....

...until Sam's op. I am meeting with the anaesthesiologist this afternoon at 1:00pm, armed with my little pack of information - it can't harm to be prepared :-) I thought by this stage that I would be quite hysterical with anxiety but am pleasantly surprised to find myself a little more relaxed than I anticipated. The truth is that there are so many people praying for Samuel, I am already receiving emails and sms's (texts) from friends telling us that they are praying and keeping him in their thoughts! So, with that kind of prayer power behind us, you can do nothing else but believe that he will be safe in God's hands :

"Don't worry about anything; instead, pray about everything. Then you will experience God's peace, which exceeds anything we can understand."
Phil : 4:6-7

So, onto something else : about a week ago there were a few emails on the RTS listserv about the challenge some of our RTS kiddies face in making friends. Although we are not at that stage where this affects Sammy now as most of his "friends" are either the battery-operated, "wheels-on-the-bus" singing kind or the hairy, tail-yielding, four-legged kind. But still fell upon a poem that, I thought, was quite sweet and relevant :

Please don't be afraid of me, I want to be your friend.
And if you get to know me, your rigid thoughts might bend.
Thoughts that I am different, from others that you know.
I really am no different, and this I'd like to show.
I live and breathe and laugh and cry,I love to play and learn.
I sometimes do things differently, which can cause some concern.
You see, some say I am special,I guess this much is true.
But if you were to ask me, I'd say you are special too.
We are all a little different, no two are just the same.
It's really something wonderful, that way there is no blame.
When things don't go just perfectly, and others get confused,
And say things like "poor child" and other terms they use.
It's okay if you look at me and might not understand,
It's okay if you touch me and even hold my hand.
My life has many obstacles, much more than you could know,
But that's now what I dwell on, it's me, that's all....and so....
Please don't be afraid of me, I want you just to see,
How truly great and wonderful a friend like me can be.

Tracey Porreca


  1. Dear Christiaan and Nicky,oh how Iwish i could have given both of you a hug and just be there.but you are all in my thoughts and prayers,please keep me u all Janina

  2. Hi Nicky, this is truly beautiful and very true. Keeping you and Chris and Sam in our prayers especially at this time. Amy is doing her bit too. Be strong and brave and God will truly get you through this..... That is right with so many prayers everything will be alright. Lots of love Anthea

  3. Hi Nicky,

    Just catching up on your blog. I LOVE this little poem you found. I'll have to tuck that away somewhere. Thanks for sharing it.
    I too am praying for your family. I'm eager to hear how things go with Sam. When you have a moment to update please let us know how things are going. In the meantime I send you many hugs and many prayers.