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 4, 2010


First, for some news on our smurf - we are still drowning in mucous. Yip, I know that's pretty graphic, but trust me, it really is THAT bad. And of course, as if we needed any more triggers, therapy today was a dream...or would that be a nightmare...with poor Heidi being vomitted on not once, but twice by our almost-always hysterical Sam. So, I am afraid, our chances of making it to Stilbaai are looking slimmer...although Meg is praying like crazy (I am not too sure that there isn't some self-serving purpose in all this praying). She "packs" for Stilbaai every day....and when she is finished packing and re-packing, then she makes a list of what all she has packed for when she re-packs it again the next day in case she forgets what she packed the previous time (it's exhausting just thinking about it). So far her Build-a-Bear has four bags which is going to be interesting as Chris has told her we are all only allowed one bag each. Let's hope she can do some SERIOUS body-squeezing if she's going to have to share Tiffany's (the BAB) clothes.

When Meg's got home from school yesterday, instead of changing out of her uniform into casuals, she decided to put on her pj's....yes, in the middle of the day! A short while later I asked her if she'd like to take a walk down to the post box to post a letter she had written to her best-friend Danielle, who has recently moved to another city. Of course she was eager to go, but not so eager to get out of her pyjamas....she was comfortable like that, after all, and if she didn't have a problem with it, why should I? The second we started heading towards the gate, Max started jumping around and getting all excited, obviously presuming (as he always does) that he was going, we asked Luke to put on his lead (Max's, not Luke's) and come with us. Well, as you can see from the pic, Luke was far from impressed first with Meghan's daytime apparel and secondly because Max literally stops every 5 metres, either to rest (he isn't the fittest dog around) or to mark that particular section of sidewalk. Talk about creating a spectacle - one gentleman completely stopped in his driveway and had a good laugh, although I can't say at pyjama-clad daughter, my exasperated son....or just simply at Max who rather resembles a miniature bear.

On a more serious note, the concept of forgiveness has really been clouding my mind lately. Over the past couple of weeks there have been several occasions when either I or someone in my family has been "hurt" or I have heard a story or read a blog about an insensitive act causing pain/emotional trauma to someone. And I know the theory surrounding it all, which is that because we are blessed with God's forgiveness when we ourselves have done wrong, we are in turn to forgive those who have done us wrong. There are times when this is something we do without even giving it a second thought, but there are other times when putting that theory into practice is a whole lot easier said than done, especially when you don't see any remorse in your "offender" and, even worse, you know for sure that if they had the opportunity to know that their actions would hurt you, they would still go ahead and do it anyway. When I least expected some clarification on how to actually achieve forgiveness, last night I read something out of a book Meghan and I read together ("Time For Two" by Danila Liebenberg). "Life offers no guarantee against pain. Pain is often caused by people who hurt you. As soon as you are hurt, you have a choice to either forgive this person or to wait in bitterness until that person receives his due." And then she goes on to suggest the following steps in order to achieve forgiveness :

"Admit to yourself what has happened to you, what it has done to you and how it is still affecting you. Do not be alarmed and draw away from how you really feel. Ultimately the truth sets you free. Pray that God will help you to forgive. Ask God's help to pray for the person/s by name. Forgive the person in prayer and in thought. Allow your pain to make you aware of how pain can affect others.

True forgiveness is an active deed. Forgiveness is not an instant trip or an instant cure. It could take you months, even years. Take the steps towards forgiveness at your own pace. Walk the long road of forgiveness to the end, DO NOT TURN AWAY."

Danila's suggested approach on achieving forgivess by literally breaking the emotions down to their core by having to admit that that person hurt you, and the surrendering of pride that sometimes goes with being able to admit it (ie, I can't believe that I allowed myself to be hurt by THAT particular person) and then allowing yourself to heal at your own pace, really encouraged me to make a greater effort at being able to forgive. Sometimes forgiveness is "romanticised" by the idea of simply going through the motions of "forgive and forget" and expecting a wonderful peace to befall you, without actually having searched your heart and admitting to yourself exactly how you were affected by the wrongdoing. So here's to pursuing true forgiveness!

1 comment:

  1. Hi Nicky, you are doing some wonderful work which seems to be paying off. It is as you say forgiveness does set you free and releases you from the bond of the one who has hurt you. As you say sometimes so much easier said than done yet with practice becomes ever easier as you grow in Faith and Trust. As a mother the hardest time to forgive is when your child is hurt by someone then only prayer will get you onto the path of true forgiveness. Your wisdom sometimes leaves me gobsmacked! Lots of love and will keep you in my prayers for a weekend getaway to Stilbaai. Anthea