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)

Sunday, February 13, 2011

Sometimes just missing having a life......

Once upon a time, many moons ago,
There lived a fair maiden, as fair maidens go.
Our maiden's life was carefree and jolly,
Filled with friends a many and just as much folly.
She'd lay for hours watching movies or reading books,
And had plenty of time to work on her looks.
She had time to exercise and take nice long showers,
To visit with friends or chat for hours.
There was time for relaxing and doing her nails,
And time to blowdry away those rat's tails.

Now, her days are filled with nappies and bottles and homework,
And enough sibling quarells to drive her berserk.
Her hairdryer and gym clothes are covered in dust,
Her hardly-used bicycle has started to rust.
Her showers now reserved to jumping swiftly in and out,
With very rarely more than two minutes under the spout.
Her house once spotless, all shiny and polished
Is now hopelessly neglected and scantily furnished.

Now, don't get me wrong...please make no mistake!
Without her family this maiden's heart would break.
They bring her a joy only a mother can know,
To the ends of the Earth for each of them she'd go.
But as much as she loves being a mother and wife,
Very occasionally she misses having a LIFE!
(Nicky de Beer : 13/02/2011)

4 comments:

  1. Hee hee - can so relate. Did you write that??? It's funny and clever and sadly too true :)

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  2. Oh Nicky - you are so very clever and even more funny honey.......had a good laugh which is rare for me on a Monday morning.......you must think about getting your writings published soon

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  3. Thanx guys! Yip, I did write it...it's amazing what you think up when you can't sleep at night...LOL!

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