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, March 31, 2010

Pics

Sam absolutely hates his Bambino seat, but we persevere
and try for a short while every day as it's the closest we
can get to him sitting
Of course he requires a shower cap - have you seen that mop
of hair? JUST KIDDING!

No, we are not trying to make a fashion statement with the
one sock - Sam had an ingrown toenail on his little "big toe" and
kept kicking and knocking it, so - this is damage control!



Having a laugh at yet another attempted feed on my part - as
you can see the majority of the food landed up on his clothes and, yes,
he actually did have a bib on!



He's developed this really...uuuhhmmm interesting (I guess) habit
of playing his tongue like this and has Meghan and Luke fascinated
at the angle and curves he manages to twist his tongue into.




In the throws of another "jumping" session - I've yet to try and
catch the actual "jump" on camera but this is the look he gets
when he knows he's about to spring another one on us (pardon
the pun)

7 comments:

  1. It's SOOOO wonderful to see new pictures of him. Thanks for sharing!

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  2. Oh my! He is just so big and grown up since I last saw him. He really is doing so well. Love love the last pic of him - such joy on his face!

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  3. I LOVE love the pictures! HE has grown! Thanks for posting these pictures. Your comments always make me chuckle too! Thanks for making my day!

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  4. Love those big blue eyes! Kelly F

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  5. Love the new pictures! He is adorable, love the blue eyes.

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  6. Sam is a busy little guy! So are you! I love the pics.

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