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)

Wednesday, December 8, 2010

Christmas Concert Pics

On a high-note, Sunday saw us enjoying the much anticipated Christmas Concert by our Sunday School at BCC and it all came together beautifully thanks to the many hours of practising and hard work put in by the children and Sunday school teachers alike.


 The costumes and props were gorgeous made by Aunty Saskia who also co-ordinated the whole concert.


 Even the teachers took part : Aunty Diane, Aunty Helga and Aunty Francis

 And Meghan and Chrisna took their parts very SERIOUSLY!



 Uncle Grant (who heads up our music ministry) also got up on stage and lead the congregation in the singing of "Mary's Boy Child", while Aunty Saskia prompted the children from the floor.

 Two beautiful angels

 Our "extended" family

On a rather low-note : we are not sure what is up with our smallest little angel. Since Thursday last week, Sam seems unable to tolerate any weight-bearing on his right leg, being his "strong" leg. For those of you that know how passionate our little Smurf is about walking, standing and jumping you will understand the concern in this. We had a series of x-rays taken yesterday from hip to toe of both legs, but it shows absolutely no indication of any fractured bones, which was my first worry especially taking into consideration the seemingly increasing occurence of our RTS-sweeties suffering with brittle bones as well their exceptionally high pain threshold. At least though a fractured bone would have provided us with an answer as to what could possibly be preventing Sam from using his leg as normal.

As jumping, walking and standing took up a rather large part of Sam's activities for the day he has found himself having to make do with things like sitting (for sure, his least favourite activity) and playing with toys.
 His body language says it all...

We are hoping that whatever it is that is bothering Sam rights itself soon

And....back to a high-note : Chrisna's step-dad, Heinrich, takes photo's for a stunning non-profit organisation called :  "Race to Live" whose vision it is to make it possible for children/adults who are suffering with life threatening diseases see their dream of experiencing a racetrack, come true.


Chrisna with her mom, Rona, and step-dad Heinrich

2 comments:

  1. Lovely pictures of the two beautiful angels and our special angel what a lovely shot of him lying down. Shame I hope whatever it is that is bothering him with his leg is soon over. It seems odd that nothing is evident yet he avoids using it. Yes he is so good at body language much better than we are. Lots of love.

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  2. Hi I'm sorry to hear about your little boy's leg...he is such a cutie. Hope it gets well soon. Could it be related to his tethered spinal cord, or has that already been surgically corrected? (Just browsed in, haven't read the whole story so I may have missed that). --Mason's mommy, www.masonjosias.blogspot.com)

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