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, November 12, 2009


“The world can be a forbidding place for children, especially if they feel that they somehow don’t measure up. A relatively minor difficulty can easily develop into a crisis of confidence, particularly when a child must listen to constant reminders of his or her deficiencies.”

“I was sustained, though I wasn’t fully conscious of it at the time, by the faith I had developed through my parents’ teaching and example. I believed in a loving God who valued me for the person I was, who – even though I was unworthy – sent His Son to die for me.”

“If your children understand in their hearts that the Creator of the universe loves them personally and has sacrificed His own Son on their behalf, they will enjoy a much healthier self-concept and be far better equipped…”

“As your children grow, any deviation from the norm – in height, weight, hairstyle, skin colour, voice, etc – will be pointed out by their peers and used to embarrass them. Sometimes even adults, who should know better, will play this cruel game. It is your job as parents to counteract these hurtful comments with love. Encourage your children. Remind them of their strong qualities and abilities. Above all, employ Scripture passages such as Luke 16:15 to teach your kids that the misguided values of man are often the very opposite of the values of God : For what is highly esteemed among men is an abomination in the sight of God”

(extracts : James Dobson)

“God does not judge by external appearance…” (Galatians 2:6)

“You created my inmost being, you knit me together in my mother’s womb”
(Psalm 139:13)

Meghan’s Contribution :

“Now faith is being sure of what we hope for and certain of what we do not see.”(Hebrews 11:1)

1 comment:

  1. Such helpful and wise quotes - they are worth holding onto for all of us.