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)

Saturday, May 1, 2010


I promised myself a while ago that I would stop asking the "Why us?" 's of why we are on this particular journey, trusting (or trying to) that this answer will be revealed at some point along the way. I do believe with my whole heart that our God is not the kind of God that would purposefully "make" a child handicapped, ill, etc purely because He thinks I am a more suitably "special needs" parent than my next-door neighbour. I do believe that tragedies like genetic abnormalities are part of the consequence of the fall of man from God's grace into the luring clutches of Satan those many years ago and that, although He certainly has the power to heal at His will, that God has to allow certain trials, tests and, yes, suffering in order for us to fulfill that particular plan He has for us, whether it be to strengthen our faith, or discover a new life purpose or whatever it might be. But when you are in the throw of a particularly challening stage like we are now with Sammy having being hospitalised again with pneumonia and a severe infection in his upper-airways, when he's so uncomfortable and battling to do basic things like feed, breathe, sleep....then it's not always that easy to rest peacefully on those beliefs. And you look around and see other good followers of Christ also suffering with their own challenges...whether its the quickly failing health of a lifelong partner, the loss of yet another precious baby, the difficulty and unrelenting hardships of trying to pick your life up again from the dark abyss of addiction, .....and sometimes those beliefs momentarily leave our heart and we falter and ask why God's people suffer so?

Edward Kuhlman says, "PAIN is the fundamental human predicament. No-one escapes life without experiencing pain, although many become preoccupied with attempts to alleviate it. Pain is the overriding, inexplicable condition of life...the touchstone of our lives. In this "trysting place" heaven and earth we meet each other in humanity and, more important, God meets us."

David Biebel writes :

"To know that in my weakness, He is strong.
To learn to trust, even when I cannot feel the ground.
To understand that I am NO master of my destiny.
To become wiser and more real."

"Do not pretend. Do not lie, but look your struggle in the eye, whenever you can, with help if you need it..and slowly, as slowly as necessary, come to terms with it. All the while remember that your life is in God's hands and that He understands struggle and is far more patient, gracious and forgiving than you can imagine."

So today, this is me....being REAL and NOT PRETENDING...because today I am frustrated and exhausted and sad that my precious, fragile little angel is battling so immensely to get well, because I know we are not yet even a micro-step down the path that we're travelling on, which is going to be filled with far more daunting challenges, and I want Sammy to be as strong as possible so that he can face all future trials head-on. And even though I am struggling a little with God today....I know that He is patient and understands and that He forgives me, as He did both Job and Jacob.

"Praise be the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
2 Corinthians 1:3-4


"Suffering? Really? Are you wondering if this is a misprint? It is not. Of course you don't like to suffer. What kind of fool would seek out pain?

Think about it though - how do you strengthen and tone your body's muscles to make them as effective as possible? You exercise them which takes effort and work and sometimes results in a bit of pain. The work you put your muscles through teaches them to be stronger.

Your faith grows in the same way. The more you are required to walk by faith through suffering and pain, the stronger your faith grows. So, suffering is a blessing because it helps you grow deeper in your faith, lean on God more and trust Him to get you through the difficult times.

Suffering is one of the primary ways your faith will grow stronger. So, as James says, "Consider it pure joy whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2) "


  1. Wow Nicky, so well said. I completely agree with your observations, especially in the first paragraph. As our pastor's wife mentioned (who has an adult special-needs daughter), this path teaches us that no human is "perfect"...we all are special needs in God's sight, and it is only when we see him face to face that we will be "perfect."

    A couple books that have helped me sort this out: J.I. Packer's "Knowing God"...especially chapter 9, God Only Wise.

    Also, Sally Clarkson's "Dancing With My Father" in finding joy in every situation that God in his infinite wisdom places us in.

    I'm praying for Sammy and you as he fights his latest battle.

  2. Hey Nicky - thanks for sharing this. It was like water to my soul. Praying for little Sam - so bleak to hear that he is so sick. Praying for strength for you and Chris.

  3. Hi Nicky

    I still question God a lot!!

    This is what I question.. Why is it that another MUST suffer or STRUGGLE for my growth and testing of faith?

    What did they ever do to deserve this?? It just seems wrong and although I understand that this is part of their journey I have a hard time accepting it, knowing that God can do something about it.

    Such young, fragile souls. How do they know that this is suppose to strenghten their faith when I haven't even had a chance to teach them about GOD yet?? I'm frustrated because I don't understand!!!

    I guess I'm still hurting and harvesting anger. Sometimes I think I've gotten through it okay but today I'm realizing that I haven't healed and accepted it.

    I am praying for little Sam, I pray that he gets better and stronger quickly. I pray that you remain strong and that I find a way to accept all of this suffering.

    Thanks for sharing this post today.

  4. I am praying for Sam i hope he gets well soon and that you all get to rest! please know he is always in our thoughts and prayers!

  5. I'm sorry Sam is sick, it's so hard to watch our children suffer. I hope he gets better soon!