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, October 28, 2009

AN XMAS WISH LIST OF NOTE

For a little light-hearted reading, Sam's big sister Meghan (8 years old) is an extremely creative little girl...which means very little goes to waste in our home as things like empty cereal boxes, empty (well most of the time) toilet and paper towel holders, foil, plastic muffin trays, you-name-it are immediately whisked away to be transformed into all sorts of wonderful creations. It also means that we go through paper and sticky-tape like most homes go through butter...LOL! Obviously I am always moaning at her as every afternoon the lounge gets turned into her "workshop" which takes hours and hours of asking her to tidy it up and her bedroom is an absolute trainwreck, but also because her constantly using the sticky-tape, foil, etc is becoming fairly expensive. So she decided that her next best bet was good ol' Santa Claus and she has made up the following Christmas Wish List which I thought was quite entertaining...please note that I have left all items as written in her own spelling :

PDA Glue (don't even know what that is)
glue stick
tinfoil
Bady Born food (Baby Born)
Bady Born nappies
glitter
poster paint
kard board
paper
pencil
colouer wool
modelling caly (clay)
felt-tip pens
cotin buds x 2
chalk pastel
rubers
sticky-tape (THANK GOODNESS)
pipe cleaners
googley eyes (LOL)
paint brushes (because the fifty she has isn't enough?)
pom poms
fake jewellery (doesn't aim high, my little girl)
colouer card
tissue paper
paper plats (just not sure at all - thought it might be paper plates)
colouer paper plates
torches (not sure where this fits in...and not just one torch we note)
battery x 20 (she definitely wants to be prepared for something)
masking tape
cotin wool x 2

So for the first time ever Meghan might actually get EVERYTHING she's asked Santa for this year.

4 comments:

  1. Lukas would LOVE to play with Meghan...he does exactly the same thing, and I have exactly the same problem with craft creations all over our house! I will NOT show him this list...it might give him too many ideas...but I can see ahead to when he's 8! ;)

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  2. Thank Goodness...thought Megs was going a bit batty!!! This afternoon she's made herself a briefcase out of pieces of A4 paper (which she secretly swipes off the printer), coloured brown and held together with (as usual) loads of sticky-tape :-)

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  3. we will make sure that some of her wish list will come true.love u guys

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  4. Thanks Janina! And thank you dearly for your sms last night :-)

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