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)

Sunday, November 7, 2010

Is it that time already.......

No! Not really! (Well not if you're like me who, being such a shopping enthusiast as it is, generally leaves Christmas shopping for the last minute) But still, for about the past week Meghan has been frantically busy MAKING our Christmas presents (can only imagine that ol' Santa's imparted some vital information to Meg and forgotten to share it with the rest of us). Anyway, I am not exactly sure as to the nature of these presents, just that each gift-making day ends with her wading through a swamp of styrofoam pieces, cellotape, endless paper offcuts, lid-less glue sticks and khoki pens, every scissor in the house she could lay her hands on and a colourful collage of paint stains on her carpet in an attempt to make it safely to her bed. So, at this point, my present is stored safely away in a nice, shiny blue gift bag sitting temptingly on her chair but cellotaped closed, just in case, while I know she is now busy with both Chris' and Sam's. However, her eagerness got the better of her and she decided to give Sam one of his "presents" just a tad early, being the following poem (with original spelling - just keeping it real) :

Sammy, you are the best baby brother ever.
I'm sad that you have to go to hospital (for the TSC surgery)
but I'm happy because your you.
Know-one could ever want a better brother.
I am so happy that I have you as my brother.

I will be EXTREMELY surprised if she makes it to Christmas Day without handing her pressies out early.

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