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, November 11, 2009

Welcome Payton

Sam and I got together this morning with our good friends, Jacqui and Matt, and also met for the first time new RTS mommy, Tammy, whose little baby, Payton, was born almost two weeks ago. Meeting Tammy brought back many memories and emotions about those first few days after hearing Sam's diagnosis and I cannot believe that this coming Sunday is already six months since Samuel was born.

Jacqui and Matt (and a glimpse of Sam in the top-right corner)

Yeah Yeah! Pose for the camera - just give me a sec..if I turn my hand just a little to the might just fit!

Such a charmer!

The first thing I remember is absolute fear - fear of an unknown syndrome, an unknown path, an unknown future...but most of all...fear of being alone in this RTS-world. Getting to know Jacqui, Lloyd and little Matt, as well as my daily text-buddy, Vickie, has been so crucial to being able to find our way. Everyone wants to....needs to belong somewhere...and having such an instantly close bond to families we basically have not known for very long, has made the transgression from the typically "normal" world we once knew to the still largely undiscovered RTS-world we've become part of, so much easier and even a little exciting. And so we warmly welcome Tammy, Tayla and Payton to our world.

It's also always such a treat to get to see Matt - who is such a precious little boy - and to hear about all the wonderful things Jacqui and Lloyd get up to with their little makes me want the next six months (or twelve...or eighteen..okay - I'll settle for six) to simply fly by...and yet I am almost scared of missing something new that Sam does or conquers or, in actual fact, any of my children. Just this last week Sam's big brother, Luke, started shaving for the first time (I threatened to post the pic on the blog, but don't want to embarass the poor kid) and I can still remember the day he was born like it was yesterday. I still remember Meghan's first day at "big school", almost two years ago...remember her crying her big blue eyes out, remember the teacher having to pry her finger-by-finger from my leg and holding her in a tight grip while I make a dash for the gate...I remember it like it was yesterday. Oh hang on - it WAS yesterday....okay, well last term at the very! Meg has had some separation issues and right up until last term we would still sometimes have tears in the morning when dropping her off at school. But the passed few weeks, she politely tells us we can go when we start walking her to her class. Let's hope that the first day of Grade 3 doesn't find us regressing.

Anyway, Sam is doing okay and has actually had quite a long nap this afternoon...YAHOOOO...hence me being able to update the blog (what washing, cleaning, cooking???) It's all about prioritising, after all! He is still very intrigued by his little hands, which regularly find their way into his mouth now - yip, even that little thumb. He also holds his rattle for a little longer, so every day there seems to be some type of progress, even though its really teeny, weeny, smidges of baby steps. He is such a character though and is extremely "verbal" and loves his new found vocabulary consisting of (time for creative spelling) goof, bffff, ggggooo(you have to "roll" the g), coo, coof and sometimes a combo, like goof-bffff (don't laugh - him and I often have like ten minute conversations in our newly-learnt Samglish). The other night, after his usual 1am feed, while I was trying to get him back to sleep he lay looking at his (unbeknown to him) sleeping dad who, at regular intervals, let out a rather loud snore. Obviously Sam thought this was an additional Samglish word, so after each snore he would promptly respond with goof, or coo, etc - you get the picture. Although it was quite funny in the beginning, after five minutes it became really old and so I had to ask Chris to please turn over so that I could get Sam to sleep. And something else that I have found absolutely FASCINATING is that Sam "talks" (Samglish of course) in his sleep. I have never heard or seen anything like it, I mean, Luke and especially Meghan talk in their sleep, but they at least waited until they had mastered their language a little more...what a precious little elf he is.

Mmmm..what shall I do today? Oh, I know - lets have a look at my hands - it just NEVER gets old!


  1. What a super blog Nicky. I had no idea you were doing this. Your little Sam is so cute. He reminds me of Nathan at that age.

    I'm glad you have found some other RTS families in your area. I wish I could do the same!

  2. I just found your blog too.. I will be looking forward to reading more. Sam is beautiful.

  3. I'm so glad you got to meet Jacqui and Matt...I'm jealous!