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)

Thursday, May 24, 2012

24th May 2012....a day of profound joy...

...when for the very first time my, completely non-verbal, son told me that he loves me.

And even though it was done by means of his was as sweet and as cherished as if it had been soft little smurfy words spoken from his mouth.

Sam has a Grasshopper App on his iPad called "I love Mom" and each page of the "book" features a picture of a different mom and her child in various aspects of their relationship with captions such as "When I am afraid, Mom helps me be brave" and "When I make something, Mom is proud."

One of the pictures is of a dark haired woman kneeling down in a flowery field with her pretty little blue-eyed, blonde-haired daughter leaning on her from behind and giving her a hug...and the caption is "I love Mom". Now I look nothing like this mom and Sam certainly looks nothing like the little girl but he plays this page over and over and over again to, seemingly, hear those words and/or appreciate the smile of the little girl. This afternoon Sam was iPadding next to me and as usual kept replaying the same page, I smiled at him and looked at something on the tv when he grunted really loudly to get my attention, then reached his arms out for my neck, pulled me closer to the iPad and played the page again.

Now, I have not used the "Miracles" label on my posts for some time...but this certainly is worthy of just that. Sam is an extremely affectionate little boy, regularly dishing out precious hugs and gobby, smoochy kisses...which of course I adore, but never in my most hopeful dreams would I have imagined Sam would understand the concept of relationships and emotions. Pure bliss....pure God!

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