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)

Sunday, March 21, 2010

AND.......WE'RE BACK!!!!

Now it would be awesome to tell you that the reason we have been M.I.A. for the last month or so was that early one bright and sunny morning we were woken up by a guy with a bullhorn shouting “GOOD MORNING DE BEER FAMILY” and who promptly sent us off on a four week vacation (seven days would just not cut it with our house) to Disney World and the Seychelles and whatever other wonderful holiday destinations there are…but alas, this was no doing of old Tye and his Extreme Makeover team. Rather – our dear old PC gave his last 123EX4756504650456XXX Error message and passed peacefully away. He is definitely in a better place, it was a long and drawn out demise with every day bringing with it a new and unimaginable error message. Not to mention the frustration for dear ol’ Mom who would spend like an hour or so typing up a new blog entry – which usually means type one sentence, put on nestargel, type another sentence, take off nestargel, type one sentence, add formula and so on and so on. No wonder my blogs very seldom seem to “flow” from one paragraph to the next – and then, just before publishing the post the pc would inevitably crash and burn and there would go my entry. Or I would start downloading my 150+ emails and on email 149 it would just restart itself and there we would delightfully begin at email no. 1 again!!!!

Says Mom : Aaarrrrrggghhhh

And then dear Chris (sorry Love, have to tell this story) first tried to resuscitate old PC with the donation of another hard drive (thanks Ed and Uncle Joe) but in the process managed to delete not only ALL my saved emails and email addy’s but (horror of horrors) every single picture we have of Sammy from like 3 months old to date!!!

Says Mom : Aaaarrrrrgggggghhhhh

But…OH HAPPY DAYS….the arrival of a brand new pc has brought with it the hope of once again having my lifeline to the outside world being connected. I have missed reading all the blogs of our wonderful RTS family and gathering as much info as I can from the RTS email list.

So, back to the reason we are ultimately here, our little bundle of joy….Grumpy Smurf. Actually, Grumpy Smurf is not doing too shabby lately. The past few days have been a little cooler which makes HEAPS of difference to his mood. He is still not loving solids but tolerating it and has managed to bring his weight up to 6.3 kgs which is HUGE for Sam….and even measured 63cm on Friday (hey, that’s only 90cm shorter than me and I have a thirty-five year headstart on him). He had another appointment with the ENT and orthopaed surgeon on Thursday and all is looking really well. But most importantly, he is really becoming his own precious little person. He doesn’t sit completely on his own yet, but balances nicely on your knee and “speaks” non-stop now (yip, even right through church service on a Sunday which means I am still bound to patrolling the foyer most of the time). He is grasping things more confidently now and doing some weight-bearing on those tiny little legs and even does, what in his mind, is a little jump (which means he all of a sudden just bring his little legs up) and shrieks with joy. He is just so incredibly alert and alive…every day with him is just such an incredible experience…yes, even the more challenging days J


  1. Yeah! It's great to hear from you again! I'm so glad Sam is doing great...I look forward to pictures!

  2. Welcome back De Beer Family!! I always look forward to reading your blog and finding out more about your little grumpy smurf.
    Hopefully it warms up soon and Sam feels better.

  3. Aaaaawwwhhh guys - I did so miss you!