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)

Friday, August 28, 2009

ASAP

Ever wonder about the abbreviation A.S.A.P.?

Generally we think of it in terms of even more hurry and stress in our lives. Maybe if we think of this abbreviation in a different manner, we will begin to find a new way to deal with those rough days along the way.

There's work to do, deadlines to meet;
You've got no time to spare,
But as you hurry and scurry-
ASAP= ALWAYS SAY A PRAYER

In the midst of family chaos,
"Quality time" is rare.
Do your best; let God do the rest-
ASAP=ALWAYS SAY A PRAYER.

It may seem like your worries
Are more than you can bear.
Slow down and take a breather-
ASAP=ALWAYS SAY A PRAYER

God knows how stressful life is;
He wants to ease our cares,
And He'll respond to all your needs
A.S.A.P.=ALWAYS SAY A PRAYER.

It's been a tough week for Sam...he's battling a terrible cold which he just can't seem to overcome and then on top of THAT, he's throat seemed to be bothering him like crazy the last couple of days so took him to the doc today..and he has severe thrush in the back of his throat. It seems like after every hurdle he makes it over, there's another two waiting in the wings and when he's managed to get through more challenging issues like breathing and feeding, it's awfully frustrating that things seemingly less "threatening" like a cold or thrush can cause him so much discomfort and misery. So, today we apply A.S.A.P. (thanks Diane) and say a prayer for Sam's health, as well as for his precious two friends...Matthew, who is also terribly ill with tonsillitis and Jodie, also battling a cold. We pray that these three little angels get well soon.

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