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, January 13, 2010

So Long 2009!

Wow...not only has Christmas come and gone, but here we are half way through January already. It seems like ages since I updated Sam's blog....could be cuz it HAS been ages. So I have been kinda struggling to return to our normal daily goings-on but Meg and Luke started school again today so there's simply no excuse for me to still be lagging around in "holiday" mode. We had a wonderful Christmas and New Year's and even manage to extend our little trip to six days thanks to Sam being fairly relaxed and comfortable, even with two changes to his environment over such a short period of time (pics to follow tomorrow!) and his health has been holding up quite nicely so far (touch wood).

So I cannot say that I am sad to see the back of 2009 which has been quite a challenging year for us, but I CAN say that I am unexpectedly thankful for some of those challenges...although, perhaps that is not entirely correct, rather that I am thankful for what we learnt about ourselves and each other as a family as a result of facing those challenges. I am by no means making light of Sam's "condition" or being disillusioned by what lies ahead for all of us and the chances are that when he falls ill again all positive thoughts will instantly vapourise (of course) but still, it is almost impossible not feel a certain amount of joy, thankfulness and pride at where Sam is today compared to where he was eight months ago...even six months ago. Granted his achievements are not the typical achievements a mom gushes about, but that's largely what makes them so the fact that when you hold your hand out to him, he automatically lifts his own hand and places it in yours...kinda like a Sam Hi-5....and how he "anticipates" certain actions like when we are playing with him and tickle him once or twice on his tummy or neck, the second you start moving closer to him he automatically anticipates the tickling and starts laughing out loud long before you are anywhere close to making contact yet. He has also started dribbling quite alot and has discovered that the dribble in addition to his "talking" makes for far more interesting "sounds" and tends to make his "bfbfbfbfbfbf" sounds now almost exclusively when he has just finished a bottle (what's better than dribble? Milk + dribble of course)! I am almost certain that Meghan and Luke did the same things but I was probably so focused on the more acknowledged milestones or achievements like sitting, holding a bottle, crawling, etc. that I never took the time to notice the more interesting ones...but thanks to our Sam I have been given the opportunity to pay attention a little more carefully.

So, here's hoping that 2010's blessings and opportunities and lessons will far outshine whatever inevitable challenges it will also surely bring....and I pray this for each and every one of family (whether it be biological family or RTS family) and all of our friends. The thought of the unknown is so completely daunting and something we instinctively fear...who wouldn't like to know what's going to happen in the next year? But sometimes the "known" can bring with it endless limitations which cripple our paths, for example we could sit back and say "Well there's no chance Sam is going to walk this year or even crawl so there's no point focusing on those areas"....the unknown forces us to push our expectations and aspirations to the limit, where we might rather say "we just don't know if he will sit or crawl or walk" so we spend some time testing those areas and, although we might not get to that specific point, we find out along the way that there's something else, completely unexpected, that he can rollerblading or doing backstroke in the swimming pool! JUST KIDDING! But you get where I am going with this...... :-) It's all just a little exciting, isn't it?


  1. It IS exciting...and I'm so excited about your attitude. Mine was no where nearly as mature as yours when Natalie was Sam's he's already ahead with great parents like you! And it is wonderful to celebrate the little milestones that others take for granted, because they are much more hard-fought than with typical kids. I pray you are able to find good therapy for Sam to help him on his path...or advice on activities to work with him on. There are books for helping developmentally delayed children, if insurance doesn't pay for therapy. Let me know if you need suggestions of books.

  2. You and Chris can be so proud of how far you have come. And of course Sam too - he looked so much more grown up when I saw him this week. So alert and interested in the world. Well done to both of you...and for allowing God to give you the strength to keep going, and to keep looking forward, and to keep loving your little Sam.

  3. You do have a wonderful perspective on things. Like Cindy said I don't think I was that grounded when Noah was so young. You are doing a great job with Sam.

  4. Nicky,

    You and Chris have such a positive outlook on things! I was no where near that when Nathan was Sam's age. It took me a long time to be okay with things and truthfully I'm just getting there now and my son is 3.5 yrs old. Blogging and connecting with my RTS family has helped me so much. I'm looking forward to getting to know Sam and your family better through your blog.