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)

Wednesday, August 26, 2009

A step back...where it all began

In about September 2008 Chris and I started "playing" with the idea of having a baby. After months of throwing the idea back and forth, we decided in October that I would go off the pill for three months giving my body enough time to work it out of my system and would use alternate "methods" until the end of the year. Then, if we were 100% sure, we would "try" from January to March - we gave the Lord a three month "window" :-) and decided that if it was God's will, I would fall pregnant within that time and if not, we would just carry on as normal. On the 5th October 2008 I officially stopped taking my pill.

At the end of October we decided to take a trip to Stilbaai for the weekend to visit Chris' folks and within half an hour I started feeling car sick. The nauseau continued throughout the weekend and after a sudden craving for the taste of beer (which I usually detest) we became a little suspicious. Two weeks later one Sunday morning (15 November) we lay in bed and, after yet another bout of nauseau, I looked at Chris and said "You know that I am pregnant!"

Of course, what were we thinking, giving the Lord 2pm after taking two pregnancy tests (uhhhmmm....we had an oopsie with the first one - it had been a while) the test came back positive...little Samuel had taken just over two weeks to enter our lives...and our hearts. Well, even before finally deciding to stop my contraception, I had told Chris that I wanted my baby boy to be called Samuel. It is such a precious name..meaning "God hears" and well, what more solid evidence could we now have than that. It was sooooo exciting talking about our plans and going "window" shopping for baby items, but somehow I knew that there was something going on. When I go through my journal, almost right from the very start I realise how frantically I prayed that my baby would be "normal", almost pleading with God. On the 15th April 2009, at my 27 week scan, my gynae confirmed that Samuel was not growing. Because his growth was so below average, he suspected that Samuel had dwarfism, but confirmed inuterine growth retardation at the very least. We made an appointment with a fetal specialist and would wait until my next scan, at 31 weeks.

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