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, January 11, 2015

I had a dream...

...or would that be, I have a dream!

Up until the wee hours of this morning I always thought that, should we find ourselves blessed with just one miracle, I would most definitely want that miracle to be speech, more so than walking...although it certainly is a struggle to have to determine which of the two would really impact ours, but mostly Sam's, quality of life the most.

It seems my heart knows though...I had a dream this morning shortly before waking up, we were at some sort of eatery, Sam and I watching the children play on the grassed area below from a patio. The children were 'zooming' around, pretending to be aeroplanes while a cinema-style big screen on the border of the play area showed movies. Sam stood next to me, clutching desperately to my hand for support and stability, as he does now. He gestured towards the play area and I slowly guided him towards the steps, which he navigated awkwardly. But once on that playground Sam started trying to walk faster and faster, straining against my hesitance to let go of his hand. I urged him over and over to wait, reminding him that he couldn't walk. Suddenly he pulled free of my hand and started running, arms outstretched in aeroplane-style. I just fell to the ground in complete and utter awe, watched him run two wide circles and then flop down on his back laughing with delight, as kids do.

The moment was exquisite...there's no other way to describe it. I've dreamt before that Sam could speak and that was super exciting...but this was something else, just pure, raw, overwhelming joy.

It is a dream I will cherish forever, or hopefully just until it becomes a reality...

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